Hepatitis C – a relationship with stigma

1. Hepatitis C – a relationship with stigma Construction and representation in the mainstream print media

2. Aim: To explore how the daily print media’s representation of hepatitis C may evoke and compound experiences of stigma and discrimination for people with hepatitis C.

3. Why study the mainstream print media and its relationship with hepatitis C ? • Extent of hepatitis C in Australia and prevalence of related discrimination • The mass print media • Plays a significant role in providing health information • Reflects the dominant features and cultural norms of the social system • Can shape and reinforce readers’ attitudes, values and beliefs

4. Which newspapers? Articles? • Eleven daily newspapers in NSW and Victoria • January 2000 to May 2002 Herald Sun; The Australian; The Age; Sydney Morning Herald; Newcastle Herald; Illawarra Mercury; The Weekend Australian; Herald Sun Sunday; The Sunday Age; Australian Financial Review; Sun Herald • Combined readership ~ 5.5 million weekly • Reach ~ 50% of people in NSW & Victoria • 210 articles referred to hepatitis C • 56 directly about hepatitis C • 154 mention hepatitis C in another context • 33 headlines contain direct reference to hepatitis C

6. Method: Thematic analysis • Goffman (1963): Stigma arises from the classification of an attribute which conforms to a negative stereotype • Abominations of the body • Blemishes of the individual character • ‘Risk, blame and consequence’ • ‘The lived experience of hepatitis C’ • ‘Hepatitis C: social control, supporting and treating the sick’ • ‘Passing, normalisation and normification’,

7. Method: Content analysis • How often messages and images are seen influence whether they will inhabit a reader’s consciousness (Chapman et al. 1994) • Measuring the frequency of messages and images in the media helps to describe their significance • In the 56 hepatitis C articles: 514 references to hepatitis C • In the 154 non-hepatitis C articles: 320 references to hepatitis C

8. Hepatitis C – The silent epidemic

9. Headlines - Abominations of the body • “Hep C “plague” outrates AIDS” – Herald Sun • “Hep C leads notifiable disease list” – Newcastle Herald • “Hep C trebled in youth” – Illawarra Mercury • “Hepatitis “epidemic” fuels doubling of liver cancer rate” – The Australian • “Hep C is biggest risk” - Herald Sun • “Hep C link to mozzie” - Herald Sun

10. Abominations of the body - Text • Legitimate: “potentially life threatening disease”, “debilitating disease”, “neglected epidemic” • Emotive: “deadly virus”, “death knell”, “deadly affliction”, “incurable virus”, "death sentence” Plague • “The disease had become a plague” • “We expect a surge in this plague which would be disastrous as there is no vaccine” • Australia described as “..being in the throes of an epidemic” • Health professionals said to be “..alarmed by its insidious and rampant spread across the country”

11. Abominations of the body - Text Moral judgments • Suggestion that hepatitis B and C can be attributed to “migrants from countries with a high prevalence of hepatitis such as South East Asian countries” • “It was crucial that those sorts of figures, along with prevalence of hep B or C in some ethnic populations, were not introduced as part of the present national debate on refugees and asylum seekers” (NSW Equal Opportunity Commission) Misleading information • “The family, who found a condom inside a leg of lamb – were still taking hepatitis C vaccine after eating a lamb roast at their home in Alice Springs in August and still feared that they might have contracted HIV”

12. Headlines: Blemishes of individual character • “Hep C rife in jails” – The Australian • “Hep C spread culprits widen” – The Australian • “The hep C untouchables – one every hour” – Herald Sun • “Hep C in addicts declines” – The Australian

13. Blemishes of individual character - text • “Desperate addicts craving drugs sell their bodies, betray their families, rob homes and businesses to fund their habits, commit murder, and spread diseases such as AIDS and hepatitis C by sharing dirty needles” • “In Australia the most common cause of hepatitis C infection remains unsterile injecting drug use. It is said to account for a staggering 91% of all new infections” • “She stole money from her mother, contracted hepatitis C, then dropped out of school. At Christmas she fell pregnant to her drug dealer boyfriend but had an abortion”

14. Blemishes of individual character - text • “So we’re told that we must keep handing out 4.1 million needles each year to stop addicts getting hepatitis C – yet learn that half of them get the disease from shared needles anyway.” • “The survey provides evidence of the benefits of at times controversial needle and syringe programs which are central to harm reduction approach adopted nation since 1985” • “Overseas experience showed a link between needle distribution centres and an increase in transmitted diseases such as hepatitis C”

15. Headlines: Risk, blame and consequence • “Hep C scare ignites review of blood law” – The Australian • “Women contract hep C after surgery” – The Age • “Hepatitis C fear at hospital” – Herald Sun

16. Risk, blame and consequence - text Risk • “Deadly virus in blood supplies, says churchman” • “The women had surgery immediately after intravenous drug users, who were later found to be carrying hepatitis C” ‘Innocent victim’ • “People who have hepatitis C but never injected drugs get tarred with the drug injecting brush” • “The father of two got hepatitis C after 3 blood transfusions in a Wollongong hospital after a suffering serious car accident in 1986” • “Many of these victims, through no fault of their own, face a debilitating lifestyle and may have had to pay for expensive medications for an illness they had no part in contracting”

17. Risk, blame and consequence - text Community needlestick injuries • “My first fear was AIDS or hepatitis C. But I couldn’t do anything about it.” • “The plain facts are that people are not catching HIV and hepatitis C viruses by such accidents. The health risks to people spiked by discarded syringes were minimal” • “The lifesavers – all volunteers – will be encouraged to obtain hepatitis A, B and C and tetanus inoculations, according to the president of the Elwood Life Saving Club” • PM also says: “Retractable syringes would ease concerns among parents who fear their children may get HIV or hepatitis C from needlestick injuries when playing in public areas.”

18. The lived experience - text • “I was no longer taking drugs when tested, in fact I was undergoing rehabilitation but was made to feel like a scumbag junkie” • “An infectious virus that causes her no end of shame and angst. Tears of bitter regret slide down her face. “You can’t ever forget the hurt and being made to feel so contaminated”

19. Headlines: Social Control • “Hepatitis C hope” – Herald Sun • “Help with hep C” – Newcastle Herald • “Good news on hep C” – The Australian • “New hope for hepatitis sufferers” – Sydney Morning Herald • “Drug hope for hepatitis C sufferers” – The Age

20. Social Control - text Policy • “The availability of appropriate support services and provision of accurate information for people with Hepatitis C as well as their families, partners, carers and friends is essential for physical and emotional wellbeing” • Tensions re injecting drug use, harm reduction and public health: “ANCHARD does not in anyway condone the use of illicit drugs, however as a public health committee we cannot ignore the fact that people do inject”

21. Social Control - text Treatment • “While results were exciting they should be treated with caution because interferon did not suit everyone” • “This study really impresses me. I’ve been inclined to watch and wait. Now I’d be more aggressive” • “He advised against people gorging themselves on Vegemite as there was no evidence that B12 was protective against the disease”

22. Passing, normalisation and normification • “Many are reformed drug users, men and women who are in responsible jobs, have young families and mortgages” • ‘Carmen’ “… seems to have it all. Alluring looks, a three year old daughter on whom she dotes, a terrace house in a fashionable suburb and a portfolio of shrewd financial investments. She is trying to be a good mother and hold down a job” • “I have yet to meet a person who hasn’t acted foolishly or even recklessly at times” • “Michelle” a heroin user with hepatitis C, tells readers, “she would use a safe injecting room because she has nowhere else to shoot up. I’ll never forgive myself if a kid stood on my syringe”

26. Hepatitis C; stigma and the media • Each theme or reference in isolation does not necessarily denote stigma • However, attributes which conform to negative stereotypes, such as notions of plague and contagion, injecting drug use, other descriptions of deviance, burden on society in terms of cost and the adverse effect of hepatitis C on ‘innocent victims’ are repeatedly portrayed. • These issues sometimes presented dispassionately as facts or information but are often described with emotive and discrediting language.

27. Challenges for the sector • Low reporting rates assist to create low community awareness of hepatitis C. • Hepatitis C is caught in a difficult and paradoxical situation. • In the articles hepatitis C is systematically defined within a stigma narrative. • Danger that this narrative will continue to proliferate. • Need for staff training and resource allocation • How to frame hepatitis C?   • Using the media to advance a cause or message involves taking risks.  

28. Just as Goffman describes that it is relationships between people which confirm stigma it is also relationships that will help to break it down. Using the daily print media, with media training, care and consideration, is a good place to start.