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