Discrimination Against Persons Affected by Leprosy and their Family Members

1. Discrimination Against Persons Affected by Leprosy and their Family Members United Nations Human Rights Geneva January 15-16 2009 Arturo C. Cunanan, Jr. MD, MPH, PhD Culion Philippines

2. “It should be recognized that the tremendous physical and social burden caused by leprosy can not be fully expressed just in terms of statistics.” Dr.S.K.. Noordeen

3. SOCIAL ASPECTS OF LEPROSY FACTS / REALITIES • Despite medical advances, people affected by leprosy are still stigmatized. • The use of the word ‘leper’ as a metaphor for whoever is feared and ostracized • Even other stigmatized groups – such as people with AIDS /HIV or ex-prisoners – will complain of being ‘treated like lepers’. • That a person with or had leprosy still experience exclusion or difficulty access to education, employment, housing, public transport and other activities like marriage.

4. that people affected by leprosy even those cured continue to hide their condition from their employers, their colleagues and even their family • even people affected by the disease will believe many of the myths about leprosy and re-enforce by society and as a result suffer from low self-esteem and morale

5. Why is there stigma in leprosy • Physical Outward Appearance • Progressive Characteristics over time • Communicability and Disabling • Religious Links • Poverty Related • Isolation and Segregation • Myths and Mysteries STIGMA LEADS TO DISCRIMINATION

6. Human Rights, Stigma and Discrimination The Philippines Experience

7. Highlights • Compulsory segregation and isolation of leprosy patients Culion Leper Colony 1906 - Separation of Children of “leprous” parentage • From birth • Sent to Welfare Institution – for adoption • Lost opportunity for parents and children for bonding • Children rivalry • Favouritism of parents • Disenfranchisement of family members • Low self esteem , low morale, • Feeling of inferiority

8. B) Equity and Access to Health Care - “Cured” Patients Suffering from other Medical and Surgical Ailment >Place on Separate Wards/Isolated >Refer to Sanitaria/Leprosaria >Stigmatization coming from general health staff C) Double Standard in Wage/Salary Level - Context of Gratuity Pay / Rehabilitation Objective D) Accessibility to Public Transportation - Particularly those with Visible Disabilities and tale tale signs of leprosy

9. D) Unequal Employment Opportunities - Particularly for cure persons affected with leprosy - With Disabilities Secondary to Leprosy - Children or Descendants to Leprosy from “Leper” colony E) Refusal / Conditional School Admission - Required Medical Clearance and other test - Must Undergo a More Rigid Process

10. Human Rights and Leprosy • Human rights Approach in Eliminating discrimination against persons affected by leprosy • that policies and institutions should be based explicitly on the norms and values set out in the international law of human rights. • offers an explicit normative framework, that of international human rights. • reinforced by legal obligations • Guide in formulation of national and international policies including reduction of stigma and discrimination against people affected by leprosy

11. Human Rights • Policy Context : Elimination of discrimination against persons affected by leprosy base on Human Rights. • the rationale of reducing stigma and discrimination no longer derives merely from the fact that the People Affected by Leprosy have needs but also from the fact that People Affected by Leprosy have rights. • An entitlement that give rise to more than charity, more than a moral or social obligation it becomes a legal obligation

12. Recommendations • Inclusion of People Affected by Leprosy representative in the National Leprosy Advisory Boards. • Development of advocacy materials and strategies addressing social and human rights issues to be included in the leprosy awareness campaign activities • Conduct consultations or survey (Regional / provincial/ sanitaria) to determine status of people affected by leprosy • For local and international NGOs and funders to continue assisting genuine social re-integration through empowerment of people affected by leprosy • For collaboration of leprosy activities with non-medical or non health programs of different government agencies like labor, education, social services, agriculture etc.

13. Continuation • To review the status, roles, relevance of leprosy sanitaria under low endemic situation , its expanded role, custodial care of disabled, old, segregated people affected by leprosy and its contribution to attainment of leprosy free zone. • To include social / human rights issues in Leprosy Summit or other leprosy forum.

14. CULION THANK YOU