1. Institute of Applied Health Sciences University of Aberdeen 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

7. 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.

10. 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

11. Spread and Decline in Europe Genomic studies – global spread Pacific spread in 18th and 19 th centuries – Hawaii (Molokai) Last cases – Shetland 1798 (John Berns!) Norway – 1940s Disappearance from northern Europe Mediterranean counties – Greece, Turkey, Spain, etc

12. 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

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

14. 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

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

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

17. World Trend in New Cases

18. 18 Case Detection Rates per 100 000

19. 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. 20 Trends in new cases of leprosy

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

22. 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

23. 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

24. 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

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

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

27. 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

28. 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

29. 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

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

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

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

33. 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

34. 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

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

36. 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

37. 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

38. 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