institute of applied health sciences university of aberdeen leprosy: challenges for public health...
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Institute of Applied Health Sciences
University of Aberdeen
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
• 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
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.
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
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
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
'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
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
'alliances for change'
Global Trend in Registered CasesGlobal Trend in Registered Cases
0
1000000
2000000
3000000
4000000
5000000
6000000
Effect of MDT on New cases and registered cases
Prevalence = Incidence X Duration
MDT
World Trend in New Cases
0
100000
200000
300000
400000
500000
600000
700000
800000
900000
18
Case Detection Rates per 100 000
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
20
Trends in new cases of leprosy
0
100000
200000
300000
400000
500000
600000
700000
800000
900000
Where are we now?
Prevalence reduced
New case detection reducing
- transmission reduced?
- new cases not being detected?
- problems with leprosy programmes?
- lack of sustainability?
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
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
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
Public Health Policy
Vertical Approaches (1950 – 2000)- efficient
- isolating
- unsustainable
Integrated Approaches (2000 +)- primary health care
- general health care
- tuberculosis, dermatology, HIV
Integration
• Community based rehabilitation– Acceptance of/by leprosy
• Neglected Tropical Disease (17)– Smallest of 17– Lack integration– Case finding/treatment strategy
• Millennium Development Goals
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
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
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
What is stigma?
• Stigma is a negative response to human differences
• Experienced stigma – discrimination
• Anticipated or perceived stigma
• Self-stigma – internalised
• Institutionalised stigma
Assessing stigma
Assessing stigma locally
Monitoring change over time
Evaluation of interventions
Qualitative and quantitative methods
ScalesSocial distance
Participation scale
Stigma Reduction
• Understanding the problem
• Planning implementation– Empowerment– Social participation– Community education
• Mobilising resources• Monitoring and
evaluation
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
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
Implications
• Immigration – on forms
• Notifiable disease status
• Deportation
• Parliament involvement - APPGs
• Olympics
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
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
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