leprosy: challenges for public health policy and social justice
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Leprosy: challenges for public health policy and social justice. Cairns Smith. Outline. What is leprosy? Historical background Control and elimination strategies Public health policy Human rights and social justice. Leprosy: Definition. - PowerPoint PPT PresentationTRANSCRIPT
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Institute of Applied Health Sciences
University of Aberdeen
Leprosy: challenges for public health policy and social justice
Cairns Smith
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Outline• What is leprosy?
• Historical background
• Control and elimination strategies
• Public health policy
• Human rights and social justice
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Leprosy: Definition
• Leprosy is a chronic, infectious disease caused by Mycobacterium leprae
• Leprosy affects the skin, the peripheral nerves, and other structures
• The medical outcome of leprosy depends on the host immune response
• The social outcome depends on community attitudes
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Peripheral nerve involvement
Nerves “of predilection” in leprosy
1. Great auricular n.
2. Ulnar n.
3. Radial cutaneous n.
5. Median n.
6. Lateral popliteal n.
7. Posterior tibial n.
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Historical Context
• 600 BC + texts in India, China and Egypt
• Bible/Koran writings
• Leprosy used as a generic term
• Associated with sin and punishment
• Europe – middle ages segregation
• Scotland – segregated communities
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Spread and Decline in Europe
• Genomic studies – global spread• Pacific spread in 18th and 19th centuries –
Hawaii (Molokai) • Last cases – Shetland 1798 (John Berns!)• Norway – 1940s• Disappearance from northern Europe• Mediterranean counties – Greece, Turkey,
Spain, etc
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Medical Approaches
1873 - Leprosy bacillus (Hansen)
Up to 1950s – segregation and care
1950’s introduction of dapsone
1960’s reconstructive surgery
1970s – dapsone resistance
1982 – Multidrug therapy- 3 drugs (dapsone, clofazimine, rifampicin)
- shorter duration
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'alliances for change'
Global Trend in Registered Cases Global Trend in Registered Cases 1985 - 911985 - 91
0
1000000
2000000
3000000
4000000
5000000
6000000
WHA resolution
MDT
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The Elimination Strategy
Case Detection- skin smears not essential- lesion counts for typing
MDT- short, fixed duration- high quality blister packs- accessible and free at delivery
Target- patients registered for treatment less than 1 in 10, 000- global and national
Time Line- by the year 2000
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'alliances for change'
Global Trend in Registered CasesGlobal Trend in Registered Cases
0
1000000
2000000
3000000
4000000
5000000
6000000
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Effect of MDT on New cases and registered cases
Prevalence = Incidence X Duration
MDT
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World Trend in New Cases
0
100000
200000
300000
400000
500000
600000
700000
800000
900000
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18
Case Detection Rates per 100 000
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Post elimination in 2000
• A number of countries had not achieved elimination target at 2000
• Gradual all but one declared elimination
• Loss of political commitment, funding
• Efforts to sustain leprosy activities
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20
Trends in new cases of leprosy
0
100000
200000
300000
400000
500000
600000
700000
800000
900000
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Where are we now?
Prevalence reduced
New case detection reducing
- transmission reduced?
- new cases not being detected?
- problems with leprosy programmes?
- lack of sustainability?
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New Case Indicators
• Proportion of children in new cases
• Proportion of women in new cases• • Proportion disability in new cases
• Proportion of MB in new cases
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New Case Indicators
• Proportion of children in new cases
- up to 30% eg Papua New Guinea• Proportion of women in new cases
- under 20% eg Ethiopia• Proportion disability in new cases
- over 20% eg China• Proportion of MB in new cases
- over 90% eg Kenya
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A tale of two countries: Brazil and India
Brazil
– prevalence above 1 in 10,000
- change the definition of elimination
India - Declared elimination in 2005- Challenged – publications, media, forum
of leprosy affected people- Parliament commissioned survey
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Public Health Policy
Vertical Approaches (1950 – 2000)- efficient
- isolating
- unsustainable
Integrated Approaches (2000 +)- primary health care
- general health care
- tuberculosis, dermatology, HIV
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Integration
• Community based rehabilitation– Acceptance of/by leprosy
• Neglected Tropical Disease (17)– Smallest of 17– Lack integration– Case finding/treatment strategy
• Millennium Development Goals
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Human rights and social justice
• Participation of people affected by leprosy
• Approaches to stigma
• UN Resolution on elimination of discrimination against people affect by leprosy - 2011
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Participation by people affected by leprosy
• Late compared to other movements• Stigma a major issue• WHO developed guidelines for the
participation of people affected• Effective at UN• Variable between countries• Preserving the history• Gathering momentum
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Leprosy and stigma – 2011 Guidelines - ILEP
1. What is stigma
2. How is health related stigma assessed
3. A roadmap to stigma reduction
4. Counseling to reduce stigma
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What is stigma?
• Stigma is a negative response to human differences
• Experienced stigma – discrimination
• Anticipated or perceived stigma
• Self-stigma – internalised
• Institutionalised stigma
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Assessing stigma
Assessing stigma locally
Monitoring change over time
Evaluation of interventions
Qualitative and quantitative methods
ScalesSocial distance
Participation scale
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Stigma Reduction
• Understanding the problem
• Planning implementation– Empowerment– Social participation– Community education
• Mobilising resources• Monitoring and
evaluation
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UN Resolution 2011
Resolution 65/215
Elimination of discrimination against persons affected by leprosy and their family members
Discriminatory language – the ‘L’ word
Wide ranging call to governments – to change legislation, regulations, etc
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UN Principles and Guidelines
• Marriage – not grounds for divorce• Children not to be separated from
parents• Eligible for election and to hold office• Access to education, housing, work• Access to healthcare• Women and children specifically
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Implications
• Immigration – on forms
• Notifiable disease status
• Deportation
• Parliament involvement - APPGs
• Olympics
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Notification of disease
• Notification of name, address etc of person newly diagnosed to local health authorities
• Potential for stigmatisation
• Information for surveillance and monitoring
• Need to assess contacts
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Challenging anti-leprosy legislation in India
DFID/Leprosy Mission project
2 India states – UP and Chhattisgarh
18 national and 40 state laws with discriminatory provisions- contesting election
- obtain driving license
- travel on trains
Training and education
Legal Network to pursue cases – 31 cases
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Enhance global strategy 2011-15
• 2015 target - reduce new cases with G2D by 35%• Sustainability• Early case detection and treatment• Contact surveillance +/- chemoprophylaxis• Prevention of disability• Community based rehabilitation• Greater participation by people affected by leprosy• Priority: equity, social exclusion, human rights,
discrimination• Monitor the threat of drug resistance• Research - new drugs, new diagnostic tests