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Leprosy: challenges for public health policy and social justice

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.

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Leprosy: challenges for public health policy and social justice

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  1. Leprosy: challenges for public health policy and social justice Cairns Smith

  2. Outline • What is leprosy? • Historical background • Control and elimination strategies • Public health policy • Human rights and social justice

  3. 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

  4. 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.

  5. 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

  6. 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

  7. 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

  8. Global Trend in Registered Cases 1985 - 91 MDT WHA resolution 'alliances for change'

  9. 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

  10. Global Trend in Registered Cases 'alliances for change'

  11. Effect of MDT on New cases and registered cases Prevalence = Incidence X Duration MDT

  12. World Trend in New Cases

  13. Case Detection Rates per 100 000

  14. 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

  15. Trends in new cases of leprosy

  16. Where are we now? Prevalence reduced New case detection reducing - transmission reduced? - new cases not being detected? - problems with leprosy programmes? - lack of sustainability?

  17. 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

  18. 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

  19. 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

  20. Public Health Policy Vertical Approaches (1950 – 2000) - efficient - isolating - unsustainable Integrated Approaches (2000 +) - primary health care - general health care - tuberculosis, dermatology, HIV

  21. Integration • Community based rehabilitation • Acceptance of/by leprosy • Neglected Tropical Disease (17) • Smallest of 17 • Lack integration • Case finding/treatment strategy • Millennium Development Goals

  22. 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

  23. 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

  24. Leprosy and stigma – 2011 Guidelines - ILEP • What is stigma • How is health related stigma assessed • A roadmap to stigma reduction • Counseling to reduce stigma

  25. What is stigma? • Stigma is a negative response to human differences • Experienced stigma – discrimination • Anticipated or perceived stigma • Self-stigma – internalised • Institutionalised stigma

  26. Assessing stigma Assessing stigma locally Monitoring change over time Evaluation of interventions Qualitative and quantitative methods Scales Social distance Participation scale

  27. Stigma Reduction • Understanding the problem • Planning implementation • Empowerment • Social participation • Community education • Mobilising resources • Monitoring and evaluation

  28. 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

  29. 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

  30. Implications • Immigration – on forms • Notifiable disease status • Deportation • Parliament involvement - APPGs • Olympics

  31. 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

  32. 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

  33. 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

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