How fear and stigma inhibit sound public health policy

1. David McDonald Consultant in Social Research & EvaluationFellow, National Centre for Epidemiology & Population HealthThe Australian National UniversityCommunity Coalition on Corrections’ Public Forum, Canberra, 14 March 2008 How fear and stigma inhibit sound public health policy

2. Overview • Stigma and discrimination • Imprisonment and prison health • Blood-borne virus (BBV) transmission and prisons • Stigma, fear and discrimination: their links to BBV transmission • The public health approach • Impediments and facilitators of rational policy re BBVs and the AMC • Discussion

3. Two worlds … ‘The vilest of deeds like poison-weedsBloom well in prison-air:It is only what is good in Man That wastes and withers there:Pale Anguish keeps the heavy gate And the Warder is Despair.’ (Oscar Wilde, ‘The Ballard of Reading Gaol’, 1896) The Health Promoting Prison movement (based on the 1986 Ottawa Charter for Health Promotion)

4. Stigma … Erving Goffmann: Stigma: notes on the management of spoiled identity (1964) • Stigma is the gap between ‘virtual social identity’ and ‘actual social identity’ • Three types: • ‘abominations of the body’ • ‘blemishes of individual character’ • ‘the tribal stigma of race, nation, and religion’

5. Stigma • A mark made upon the skin by burning with a hot iron…as a token of infamy or subjection; a brand (OED) • Stigmatize: to set a stigma upon; to mark with a sign of disgrace or infamy; to characterize by a term implying severe censorship or condemnation (OED)

6. Thief being branded, engraving, ca. 1638 (Source: www.bowdoin.edu/news/archives/images/brand2.jpg)

7. Stigma is a social process, linked to discrimination • Illness is constructed as preventable or controllable • ‘Immoral’ behaviours causing illness are identified • These behaviours are associated with ‘carriers’ of the illness in other groups… • Certain people are thus blamed for their own infection and • Status loss is projected onto the ‘other’, which may (or may not) result in disadvantage to them: discrimination(Deacon 2006) This is dependent upon unequal power relationships

8. Who are the stigmatized? Category or label Choices/behaviour/ situation • Drug use • Sexual partner(s) • What illness one is living with • Heroin or shiraz? • Gay lesbian bisexual transgender or straight? • Hepatitis C, HIV/AIDS or high blood pressure?

9. Why do we imprison people? “Men are sent to prison as a punishment, not for punishment”(Sir Alexander Patterson, UK 1930s) • Functions of sentencing & imprisonment: • punish • deter • incapacitate • rehabilitate

10. Blood-borne viruses and prison • Prison populations and imprisonment rates are rising • Hepatitis C, hepatitis B & HIV/AIDS transmission in prisons are key health and management concerns • Risk factors include: • High prevalence of HCV and HBV among prisoners • High-risk injecting • High risk sexual behaviour • Lack of resources for prevention • Stigma and discrimination

11. Blood-borne viruses and prison • HCV & HBV transmission occurs in Australian prisons: ‘Individuals entering an Australian prison HCV negative have a 10% per annum chance of becoming infected with the virus’(Batey 2007) • Leading risk factors • Injecting: contaminated injecting environments and contaminated injecting equipment (Butler et al. 2004) • Among non-injectors: contaminated tattooing environments and contaminated tattooing equipment (Butler et al. 2004) • Correctional Services’ and Governments’ policies reflecting and creating stigma and discrimination

12. Stigma, fear and discrimination in the community Anti-Discrimination Board of NSW 2001: C-change: the report of the enquiry into hepatitis C related discrimination • The evidence to this Enquiry clearly demonstrates that hepatitis C is a highly stigmatised condition and that discrimination against people with hepatitis C is rife. • Such discrimination is often driven by irrational fears about hepatitis C infection, due to an inadequate understanding of how hepatitis C is transmitted. • However, a perhaps more powerful driving force for discrimination than ignorance about hepatitis C transmission, is that infection is inextricably linked with illicit drug use, a highly stigmatised behaviour.

13. …and particularly in health settings • ‘Discrimination was reported by 22% of the 237 IDUs who reported being HCV-positive, with 17% reporting that the discrimination occurred in the preceding 12 months. • …half [the incidents] were perceived to be due to their drug user status, 15% of these incidents were due to HCV status and 25% due to a combination of both. • Twenty-five incidents occurred in a health-care setting, of which 13 resulted in the service being withheld.’ (Day et al. 2003)

14. The Public Health Approach host agent environment

15. The Public Health Approach • The core of health promotion: making healthy choices easy choices • Change the person • Change the agent • Change the environment/system

16. Preventing the BBV epidemic in prisons • Primary prevention: prevent the onset of the condition • Eliminating the organism (BBVs and stigma) • Environmental protection • Interrupting the chain of transmission • Reducing susceptibility in the host • Health education and community participation • Secondary prevention: arrest the progression of an established condition • Screening • Investigation of the causes, transmission pathways and risk factors, and develop interventions • Tertiary prevention: limiting the adverse consequences of an established condition • Treatment(O’Brien 2006)

17. Dealing with stigma and discrimination and BBV transmission in the AMC • ACT Human Rights Commission’s Human Rights Audit on the Operation of the ACT Correctional Facilities 2007 • auditing prisoner health records and conducting an epidemiological survey • strategies for the prevention of BBV transmission • ‘Consistent with the ethos of a healthy prison, the emphasis must continue to shift from a culture that privileges control and security over detainees’ needs. Instead, meeting detainees’ needs should be acknowledged as assisting to maintain security and order in the prison’ (Recommendation 5.2.1, p. 93, my emphasis).

18. Impediments to & facilitators of rational policy on the AMC • The players in the policy process:policy makers, influencers, the public (affected communities), media (Nutbeam 2006) • How evidence is used: as a prop or for enlightenment? (Nutley et al. 2007) • Types of evidence: • research • knowledge & information • ideas & interests • politics • economics (Bowen & Zwi 2005)

19. Assessing & monitoring stigma & discrimination in the AMC • UNAIDS Protocol for the Identification of Discrimination Against People Living with HIV (UNAIDS 2000) • Examples of indicators; for each assess as to required by law, required by internal protocols/regulations or simply occurring in practice: • Refusal to treat on grounds of BBV status • Differential treatment on grounds of BBV status • Testing without knowledge • Refusal to inform a person of the results of a test • Health controls, e.g. segregation • Compulsory notification of BBV status to sexual partners, relatives, etc. • Breaches of confidentiality

20. For discussion … • Is the concept of a ‘heath promoting prison’ realistic or just pie-in-the-sky? • Is it true that Correctional Services’ and Governments’ policies can reflect and create stigma and discrimination? • and that this is a risk factor for blood-borne virus transmission? • Fear of drug users and their HCV positive status and discrimination against them are rife in the community, including in health care settings. Can the AMC be better? • Focus where: prisoners’ knowledge, attitudes & behaviour? Prison staff? Corrections policy generally? Elsewhere? • How can we move to a situation where ‘…meeting detainees’ needs should be acknowledged as assisting to maintain security and order in the prison’ (ACT Human Rights Commission 2007)? • Should qualitative and quantitative assessments of stigma and discrimination be part of the performance indicators for evaluating the AMC?

21. References International Conference on Health Promotion 1986, 'Ottawa Charter for Health Promotion, WHO/HPR/HEP/95.1', paper presented to First International Conference on Health Promotion, Ottawa, 17-21 November, <http://www.who.int/hpr/NPH/docs/ottawa_charter_hp.pdf>. Goffman, E 1963, Stigma: notes on the management of spoiled identity, Penguin Books, Harmondsworth, Eng. Link, BG & Phelan, JC 2001, 'Conceptualizing stigma', Annual Review of Sociology, p. 363. Deacon, H 2006, 'Towards a sustainable theory of health-related stigma: lessons from the HIV/AIDS literature', Journal of Community and Applied Social Psychology, vol. 16, pp. 418-25. Braithwaite, J 1996, Dorothy J. Killam Memorial Lecture: Restorative Justice and a Better Future, Dalhousie University, 17 October, 1996, viewed 20 Nov. 2000 <http://www.realjustice.org/Pages/braithwaite.html>. Batey, RG 2007, 'Controversies in and challenges to our understanding of hepatitis C', World Journal of Gastroenterology, vol. 13, no. 31, pp. 4168-76. Butler, T, Kariminia, A, Levy, M & Kaldor, J 2004, 'Prisoners are at risk for hepatitis C transmission', European Journal of Epidemiology, vol. 19, no. 12, pp. 1119-22. New South Wales, Anti-Discrimination Board 2001, C change: report of the enquiry into hepatitis C related discrimination, The Board, [Sydney]. Day, C, Ross, J & Dolan, K 2003, 'Hepatitis C-related discrimination among heroin users in Sydney: drug user or hepatitis C discrimination?' Drug Alcohol Rev, vol. 22, no. 3, pp. 317-21.

22. References (cont.) O'Brien, S 2006, 'Preventing epidemics of communicable disease', in D Pencheon, C Guest, D Melzer & JAM Gray (eds), Oxford handbook of public health practice, 2nd edn, Oxford University Press, Oxford, pp. 206-16. ACT Human Rights Commission 2007, Human Rights Audit on the Operation of ACT Correctional Facilities under Corrections Legislation, Human Rights Commission, Canberra. Nutbeam, D 2006, 'Developing healthy public policy', in D Pencheon, C Guest, D Melzer & JAM Gray (eds), Oxford handbook of public health practice, 2nd edn, Oxford University Press, Oxford, pp. 312-8. Nutley, SM, Walter, I & Davies, HTO 2007, Using evidence: how research can inform public services, Policy Press, Bristol. Bowen, S & Zwi, AB 2005, 'Pathways to "evidence-informed" policy and practice: a framework for action', PLoS Medicine, vol. 2, no. 7, p. e166. UNAIDS: Joint United Nations Programme on HIV/AIDS 2000, Protocol for the identification of discrimination against people living with HIV, UNAIDS Best Practice Collection, Joint United Nations Programme on HIV/AIDS, Geneva, http://data.unaids.org/Publications/IRC-pub01/JC295-Protocol_en.pdf .

23. Presenter’s contacts David McDonald Director Social Research & Evaluation Pty Ltd PO Box 1355 Woden ACT 2606 Phone: (02) 6238 3706 Mobile:0416 231 890 Fax:(02) 9475 4274 Email:mail@socialresearch.com.au Web: www.socialresearch.com.au ========================================== Fellow National Centre for Epidemiology and Population Health The Australian National University Canberra ACT 0200 Email: david.mcdonald@anu.edu.au