Hepatitis C: Stigma, silence and chronic illness

Magdalena Harris
 Introduction

 Hepatitis C: the silent epidemic

 The Auckland interviews: secrecy and disclosure
 What is health?
 Chronic illness, work and morality
 Hepatitis C: “a druggie’s disease”
 Prohibition: “crossing a line”
 Infection: “we felt like lepers”
 ‘Stigma: “the reject of society”
 Solutions?
 Hepatitis C: the silent epidemic

 Blood borne virus discovered and named in 1989

 Since 1990 primarily transmitted through injection
practices.
 Manifests as chronic liver disease in 80% of those
infected.
 Symptoms include fatigue, nausea and depression
 Prevalence: Global: 170 million +
United States: 4 million +
Australia: 260,000 +
New Zealand: 35,000 +
 Secrecy and disclosure

I try not to tell people aye. I don’t think it’s a good

thing to tell people. But in NA it is alright, because
it is like, oh well you have got it too. It is not
uncommon for people to have it in NA. (Robert)

So it is secret squirrel sort of stuff … It reminds me

of the drug using years, you know, it is just the
same. It casts you right back in there, and it’s
almost, yeah it is like living with a secret.
(Elizabeth)
 Silence and apathy

 Auckland and Sydney participants spoke of:

- Feeling stigmatised / being discriminated against
- Not wishing to disclose
- A lack of social support

“I was astounded to learn of the infection rates here in W.

MI... Hepatitis C is practically an unheard of disease within
the general public... However what I have found most
disheartening is the apathy amongst the hepatitis C positive
community itself.” (D. Robinson, Board of Directors MHCF, 2006.)
 What is ‘health’ ?

Health is a “state of complete physical, mental and social

well-being and not merely the absence of disease or
infirmity” (World Health Organisation 2006)

[The doctors say] basically have interferon or have a

horrible life, you know. With interferon you have got a bit of
a chance of having a better than horrible life, or you might
even end up having a worse one. We have got nothing
else to offer you. (Matthew)
What is ‘health’ ?
Individual responsibility
 Chronic illness, work and morality

Every time I see my eldest brother he says “why don’t

you get a job”. I have told him a hundred times, but he
just does not have a clue about being debilitated in any
way. (Todd)

People don’t actually want to know about chronic

illness…they want you to be well…If you want me to tell
you that I am feeling better just so you feel good, I will
tell you I am feeling fantastic. Feel alright now? So that
is not my reality – fuck off! (Miranda)
 Hepatitis C: “a druggie’s disease”

Having hepatitis and having a history of drug use is

morally reprehensible to a lot of people and you feel
that…(Chris)

To begin with I didn’t say what the illness was, and then
I started to make sure that when I told people to say
that I had got it from a blood transfusion. There is very
much a prejudice out there about it being a druggie’s
disease. (Miranda)
 ‘Guilty’ and ‘innocent’ victims

It was just a label that I could not shake, and

those doctors would just not let me shake it, they
would not, they insisted I was a drug addict, and
no they got it all wrong. And I paid quite a price
for that actually; they were prepared to let me
suffer through it quite a bit. (Amy)
 Prohibition: “crossing a line”

When I became an IDU, they saw me as crossing a

line where it not was going to get bad, but was bad,
stayed bad...The method of digesting the drug I
believe dictates to them…it is [seen as] so much
worse than alcohol which angers me, because it is not
so much worse than alcohol, there are some things
that make it a risky situation that alcohol doesn’t have,
granted. But they both kill and it was when I started
using IV drugs other people suddenly thought my god
you have a problem. (Zac)
 Infection: “we felt like lepers”

I remember going down to the doctor to get the

kids tested and we all walked in, and the secretary
looked at the file and realised what we were there
for, and she took three steps back, she really
backed off physically, it was really obvious that she
went ‘oh these people’, we felt like lepers. I got a bit
of that, particularly from dentists. I had trouble
finding a dentist. (Annabel)
 Stigma: the ‘reject of society’

It is that feeling of being an outcast, the reject of society…

that does hurt. (Josie)

“Stigma is linked to the workings of social inequality …

[which] requires us to think more broadly about how some
individuals and groups come to be socially excluded and
about the forces that create and reinforce exclusion.
(Parker and Aggleton, 2003, p. 16)
 Solutions?

How can we ‘rethink’ / alleviate:

 1. The reification of paid work and functionality?

 2. The denigration of people who inject drugs ?

 3. Silence and inaction in regards to hepatitis C?

How can the stigma of injecting drug use be alleviated?

 Is it possible to change public attitudes within our present

context of prohibition?
 What are the effects of medicalising illicit drug users?
 Are there other ways that being an injecting drug user can
be conceptualised?

I hate that discrimination, I like to shock people, it drives

me crazy when I hear people saying drug addicts have
[hepatitis C], and I say “well Alex has it too”…they are
totally gobsmacked. And I have done it once because it
was irritating - just peoples ignorance - that drug addicts
are just a lot of dead shits and they deserve to have
hepatitis C, when I hear that I think whew…
(Mary, Alex’s wife)
How can hepatitis C silence and apathy be alleviated?

 Why is there so little social research on HCV in the US?

 What inhibits community activism for hepatitis C?
 How do we mobilize community response to hepatitis C?
 What meanings of the word community are useful in
thinking about hepatitis C?

I read voraciously whatever comes from the hepatitis C

support group. But once again I find that has a very
negative slant, it is all based around the needle exchange
and pot luck suppers which make it sound like everybody
with hepatitis C is on a benefit of some sort, the sickness
benefit, has a history of drug use, and is probably still a
user. And I have never gone to any group meetings
because I consider I just won’t fit…(Elisabeth)
 Chronic illness and the work ethic

 Is it possible in our society to weaken the connection

between paid work and individual worth?
 How can notions of ‘participation’, ‘activity’ and ‘value’ be
extended to domains other than paid work?
 How can we ‘rethink’ the concept of ‘dependency’.

In society most of us are given the message that you are a

good person if you work hard and keep going, Calvinistic
work ethic... So what happens to people when they can’t
work, around their sense of self, can be devastating.
(Miranda)
‘Ouch! Hep C’ Campaign
NZ Hepatitis C Resource Centre
 Breaking the ill health /discrimination nexus

“If issues such as what constitutes health or what

substances are regarded as illicit are so
dependent upon changing cultural and historical
circumstances, can we not anticipate that it is
genuinely possible to break the nexus between
certain types of ill health and the discrimination
that accompanies them?”

Puplick, C. (2001). C Change: Report of the enquiry into hepatitis C

related discrimination. Anti-Discrimination Board of New South
Wales.