Challenging an Epidemic of Stigma:

1. Challenging an Epidemic of Stigma: The Importance of Biologically and Socially Appropriate Interventions XV World AIDS Conference, Bangkok, Thailand July 15, 2004 Josephine MacIntosh, PhD (candidate) Interdisciplinary Studies, University of Victoria, Canada Funded by Michael Smith Foundation for Health Research / BC Medical Services Foundation (Population Health)

2. Important Definitions • Stigma: Characteristic(s) that ostracizes a person from ‘normal’ society and decrease life chances (Link & Phelan, 2001) • Discrimination: Actions by others that further reduce life chances by limiting access to jobs, education, earnings, housing, healthcare, etc (Canadian HIV/AIDS Legal Network, 1999) • HIV stigma and discrimination: Attaches itself to pre-existing stigmas, to racial stereotypes, or to stigma against sexual minorities (Canadian HIV/AIDS Legal Network, 1999) 2

3. Origins of Stigma “Stigma develops out of an initial, universally held motivation to avoid danger, followed by an (often exaggerated) perception of characteristics that promote threat, accompanied by a social sharing of these perceptions with others. Moreover… stigmas exist primarily in the minds of stigmatizers and stigmatized individuals ascultural social constructions…” (Stangor & Crandall, 2000:62-3) 3

4. Stigma: Epidemiological View • Behaviours • Use of alcohol, tobacco, or illicit drugs, homosexuality, spousal or child abuse • Structural abnormalities • Facial/skeletal abnormalities, abnormality of skin pigmentation or body size • Functional abnormalities • Abnormalities of motor, sensory or mental functions • Contagious diseases • Leprosy, TB, HIV/AIDS and other STIs (Reingold & Krishnan, 2001) 4

5. Modes of Disease Transmission • Vector-borne: Transmitted via non-human hosts such as mosquitos, lice, fleas etc • West Nile virus, avian influenza, malaria, typhus, bubonic plague • Direct contact: Transmitted via respiration, fecal-oral or sexual contact (no non-human vector) • Measles, syphilis, most influenzas, chickenpox, HIV/AIDS • Environmental contamination: Transmitted via contact with pathogens living in food, water, air, or on items such as contaminated clothing or needles • Cholera, typhoid, salmonella, HIV/AIDS (McGrath, 1991) 5

6. Appropriate Biological Responses • Elimination of source of infection • Including vector populations, pathogenic organisms, sources of environmental contaminants • Elimination of adequate contact • Between sources of infection, susceptible hosts and susceptible vectors • Reducing infectivity • Of vectors, hosts, or environments • Reducing host susceptibility (McGrath, 1991) 6

7. Social Responses to Disease • Appropriate: Cause little social disruption • Inappropriate: Cause much social disruption • Inappropriate responses may increase the biological impact by increasing incidence of disease • Common social responses • Flight • Adoption of extraordinary measures • Scapegoating, social ostracism (McGrath, 1991) 7

8. Social Construction of Illness • Meaning is attached to illness based on: • Ill individual, who provides a social circumstance • An ‘other’ who provides a social reaction • A moral judgment made by the ‘other’ • Social reactions which stigmatize are: • Often out of proportion w/ pathology of the disease • Often do little to reduce transmission • May increase transmission probability (Brown 1998: Waxler, 1998; Inhorn, 1998; McGrath, 1991) 8

9. Deviance and Immorality • Historically, STIs have been stigmatized because of the connection with deviant or immoral behaviour • Moral judgments are made based on culpability • Lifestyles at fault?  pronounced ‘guilty’ • Naïve partners of the guilty  pronounced ‘innocent’ • Children of innocents  pronounced ‘defenseless victims’ • Fear of moral judgment isolates those infected, affected, and ‘at risk’ and can preclude health preserving behaviours (Busza, 1999; Gilmore & Sommerville, 1994; Goldin, 1994) • Probable result  accelerated epidemic 9

10. The Social Construction of HIV • Negative moral judgments are especially probable with HIV because stigma of the illness is layered upon pre-existing stigmas • Does not encourage interventions which are, at the same time, biologically and socially appropriate • Seriously disrupts social systems which would normally support the prevention/care continuum 10

11. HIV/AIDS: The New Leprosy • Like Hansen’s disease, HIV has a known cause, effective treatments, no known cure and HIV patients, like lepers, are often feared, shunned, refused care, rejected, exiled, etc • Medical facts of both diseases are similar • Initially unremarkable, often results in late diagnosis • Early diagnosis and treatment slows progression • Later, both result in serious & visible medical consequences (Waxler, 1998) 11

12. Improve Public Health • Biologically appropriate interventions: • Eliminate source of infection and/or • Eliminate contact with source and/or • Reduce infectivity and/or • Reduce susceptibility • Socially appropriate interventions: • Limit social and economic disruption • Promote stability along prevention/care continuum 12

13. Appropriate Responses? • Eliminate source of infection • Genocide of those infected • Eliminate contact with source • Use of latex condoms • Universal precautions • Partner notification • Restrict travel, impose quarantine, or jail terms • Mandatory testing, involuntary follow-up testing • Deny traditional rituals like funerals & marriage 13

14. Appropriate Responses? • Reduce infectivity • Large scale distribution of drugs, as proposed in the World Health Organization ‘3 by 5’ plan(WHO, 2003) • See: http://www.who.int/3by5/en/ • Provision of vaccines (when they become available) to ‘at risk’ populations (WHO, 2003) • Reduce susceptibility • Dietary supplements (i.e. selenium) • See: Foster, Harold (2001). “What Really Causes AIDS”. Trafford: Victoria. Online: www.hdfoster.com/WhatReallyCausesAIDS.pdf 14

15. Conclusions • HIV is spreading at twice the predicted rate • Limiting exposure to STIs is complex • Many social responses to HIV increase stigma • Fear of stigma is problematic because many: • Dissociate themselves from risk groups • Avoid testing & counseling • Avoid accessing health care • Resist behaviour change 15

16. Conclusions • Incidence of HIV/AIDS will continue to increase without appropriate interventions • Current public health response is inadequate • Need to address stigma • Need to provide affordable drugs by implementing the WHO ‘3 by 5 plan’ • Need concentrated social action to normalize prevention/care/treatment 16

17. Social Action: Why? Because… • ‘Us’ versus ‘them’ mentality increases stigma • Hardwired fears of death are an over-reaction to a pathogen that is relatively easy to avoid • Blaming others is illogical when we have the capacity to eliminate risk of exposure, reduce infectivity, and potentially reduce susceptibility • HIV/AIDS poses a great threat to humanity and if we are to survive, we must adapt 17

18. Last Words…. “If the pandemic is to be halted, the overarching epidemic of stigma and discrimination that obstructs prevention, care, and treatment for those infected, affected, and ‘at risk’ for HIV must be challenged publicly and politically.” (MacIntosh, 2003) Because… ‘we’ ARE ‘them’ (Gilmore & Somerville, 1994). 18