the social production of hepatitis C risk a synthesis of qualitative research

1
the social production of hepatitis C riska
synthesis of qualitative research
Tim Rhodes
2
background

• prevalence remains high
• usually 30-60
• incidence can also be high
• including among recent or new injectors
• transmission risk environment
• transmissibility high at 10 of injections
• paraphernalia sharing as a contributing factor
• modest prevention intervention impact
• despite intervention impact on reported risk
  behaviour

3
hepatitis C prevalence
Health Protection Agency/Vivian Hope, 2007
4
HCV incidence

• London, 2001/2003 Judd et al., 2005
• prevalence 46
• incidence lt6yrs 41.8/100 py
• Sydney, 1999/2002 Maher et al., 2006
• incidence 30.8/100 py
• incidence lt1yr 133/100 py
• time to seroconversion among lt2yrs, 1.6 years
• Sydney, re-infection, 2002/2005 Micallef et al.,
  2007
• initial infection 17/100 py
• re-infection 31/100 py

5
HCV acquisition
Sutton et al.. BMC Infection, 2006
6
high risk factors

• Prevalence of anti-HCV 54 overall
• Injectors in England, outside London, 2005

Data source Unlinked anonymous IDU survey
community enhancement.
7
hepatitis C prevention

• review of reviews Nora Palmateer, Jo Kimber
• efficacy and effectiveness
• 2000 onwards
• 1083 abstracts, 60 reviewed, 15 core reviews,
  45 supplementary
• NSP and HCV incidence
• 5, of which 3 core reviews Gibson et al Tilson
  et al Wodak et al.
• significantly less impact on transmission and
  acquisition of hepatitis C virus than on HIV,
  though one case-control study shows a dramatic
  decrease in HCV and HBV acquisition Tilson et
  al., 2007

8
hepatitis C incidence NSP
9
hepatitis C prevention

• NSP effects on incidence continued
• Hagan et al 2004
• NSP longer time to seroconversion, but not
  significant
• Roy et al 2007
• NSP use in cohort not significantly associated
  with seroconversion
• Van de Berg et al 2007
• always NSP use slightly lower seroconversion risk
  than no use
• irregular NSP users at highest risk
• in multivariable analyses, no independent effects
• conclusions Palmateer, Kimber
• stronger designs (case control) find weaker
  associations
• weaker designs (serial cross-sectional,
  ecological) conflicting evidence

10
injecting risk behaviour NSP
11
hepatitis C prevention

• NSP effects on risk behaviour
• Tilson et al 2007
• 13 cohorts involving NSP participation, reduced
  needle sharing
• all strong designs demonstrated positive
  associations
• participation in multi-component HIV
  prevention programs that include needle and
  syringe exchange is associated with a reduction
  in drug-related HIV risk behaviour
• Wodak et al 2004
• 28 studies, of which 23 show positive
  associations
• Gibson et al 2001
• 23 studies, 21 of which included above
• There is substantial evidence that syringe
  exchange programs are effective in preventing HIV
  risk behaviour and HIV seroconveration among
  IDU

12
method

• English language qualitative studies since 2000
• empirical non-numerical data
• IDU perspectives
• multiple sources
• databases, MEDLINE, EMBASE, PubMed, BIDS, IBSS,
  PsychInfo
• hand-searching journals
• inclusion
• multiple papers from single studies included
• editorials and reviews excluded
• analysis
• meta-ethnographic
• compare and contrast key themes (reciprocal
  translation)
• leading to new over-arching constructs/themes
• appraisal using CASP (reporting of
  methods/analysis, poor)

13
sample (n31)

• 24 core papers on risk perception
• 7 core papers on HCV positivity, with
  sufficient data
• Australia (14), UK (9), North America (5),
  elsewhere (3)
• representing 24 unique studies
• among an aggregate of over 1,000 injectors
• almost all semi-structured / depth interviews
  (n30, 13-67)
• mix of service contact and snowballing
• most published in 2004 (13) 2005 (8), 2006 (1),
  2007 (6), 2008 (3)
• See Table

14
themes

• risk ubiquity
• relative viral risk
• knowledge uncertainty
• hygiene and the body
• trust and intimacy
• risk environment
• the individualisation of responsibility

15
risk ubiquity

• easy to catch and omnipresent
• They are telling you its easier to catch than
  HIV They were passing around leaflets out on
  hep C and it was scaring people at the time. So
  they were saying it was 100 times easier to catch
  than HIV, and just sharing a filter or a spoon
  was enough. Yeah, and after that, it was sort of
  everywhere. 44
• everywhere, all over the place
• everyone, every injector has hepatitis now,
  everybodys got it

16
risk ubiquity

• ubiquitous, unavoidable and normal
• Its almost normal to have hepatitis C for us.
  Its almost sure that if youre gonna inject,
  youll get it one day. 59
• The chances are you have probably got hepatitis
  C already if youre a long term needle user. 40
  
• everyone, every injector, everybodys got
  it
• normal, ordinary rather than special

17
risk ubiquity

• defining identity
• I didnt have to get checked, Ive been at it
  injecting for so long, I know Ive got it. 61
• an injector like everybody else 59
• diagnosis little consistent impact on practice
  37

18
risk ubiquity

• situated exceptions
• short-term impact of diagnosis considerable
  44,48,55,59,61
• fear and anxiety regarding social consequences
  38,44,47,55,56
• social networks shape social accommodation
  57,59
• non-street injectors controlled, greater
  concern 16
• hepatitis C, symbolic marker, of junky identity
  55,63,65
• if participants could avoid sharing needles then
  they would 50

19
risk ubiquity

• exceptions controlled injectors
• Ive never used someone elses water, syringe or
  spoon. Its a new needle each time. I always do
  it at home. Its a rare thing that shoot up
  outside. 59
• exceptions immediate reactions to diagnosis
• I just got Hep C I just said Fuck it, I dont
  care, Ill just keep, keep going the way I am,
  you know. Understand? And just, when you get put
  down, it just, your self-esteem goes down, you
  know. And then you just dont give a fuck. 61

20
risk ubiquity

• exceptions strategic resistance
• strategic rejection of normative assumptions of
  the inevitability of positivity and acceptability
  of needle/syringe sharing
• Shes going can we use yours? syringe. No.
  And she goes, Why? You have something? I was
  like, Yeah, I have Hep C. And I told her I
  dont want it to be, like, my fault if I give
  you, you know. 61

21
relative viral risk

• HIV has viral master status
• hepatitis C is post-AIDS
• HIV/AIDS linked to a time of panic and attention
• generational differences those post-AIDS have
  safety commonsense, but no heightened risk
  awareness It is just commonsense, I didnt
  really learn it from anywhere
• hepatitis C known inside AIDS, less knowable
• hepatitis C less serious, less of a concern
• trivialisation of diagnosis by IDU and experts

22
relative viral risk

• less knowable
• I know a lot, lot more about AIDS and what it is
  than hepatitis C. I havent got a clue what it
  hepatitis C is, and I havent got a clue what
  hepatitis B is at all Ive no idea why, how you
  get it, and how you get rid of it, if you can get
  rid of it. 59
• When I started injecting, I mean, I know about
  HIV. And I know in the 80s there was that big
  media campaign about HIV, so I would say anything
  I had done, say like cleaning needles out and
  things like that, would be because of HIV not
  hepatitis. 59

23
relative viral risk

• less serious, less of an immediate concern
• With hepatitis, if you take care of yourself,
  you can beat it. With AIDS, if you catch the flu,
  youll get pneumonia and youll die. Its much
  more serious. 59
• When you think about contracting diseases I
  reckon AIDS is at the front of peoples minds.
  Its the first one people think of. Hepatitis is
  the lesser of the two. 43
• I had trivialised it hepatitis C, and maybe it
  was like that that came up with reasons to share
  with people At least its not AIDS, you wont
  die of hepatitis C. 59

24
relative viral risk

• less of a biographical disruption
• Ive had Hep C for about probably eight years,
  and it never bothered me, it never really
  bothered me. But once I got the HIV, I kind of
  went off the deep end.61
• You know, you got Hep C, you get Hep C. Like
  Ive had it for 23, 25 years or whatever, and it
  hasnt affected my life that much, hey. 61

25
relative viral risk

• trivialisation
• a suite of tests, testing unaware, diagnosis
  unexpected
• inadequate preparation or counselling HIV/AIDS
  linked to a time of panic and attention
• When I actually went back to get the results,
  the guy says to me You dont have HIV, you dont
  have AIDS, but you do have hepatitis C. And I
  sat there crying. He was saying Oh, it doesnt
  really matter That upset me more than the
  diagnosis. 43

26
knowledge uncertainty

• confusion and mystery
• signs, symptoms and medical effects
• varieties of hepatitis hepatitis, jaundice
• antibody test results
• modes of transmission spoons, filters, sex
• knowledge provisional and accumulating
• Its all a bit of a mystery really I dont
  know A, B, C, what the difference is, but Ive
  heard about it for years
• I dont know how I got it
• They experts dont know a lot about hep C at
  all

27
knowledge uncertainty

• antibody test results
• I havent got AIDS and I havent got Hep B, but
  what I was told was that I carry the antibodies
  for C. I said Whats that mean? Apparently,
  its that I might have a mild case of it, and
  dont have it any more. 50
• I have been tested for it, and it was clear, but
  I mean until then, I was in a bit of a worry I
  still dont really know much about it. 40

28
knowledge uncertainty

• transmission
• I didnt know you could get hep C from using the
  same spoon. 41
• I knew then when first hearing about hepatitis
  C that drug users were at risk, but I didnt
  know that hepatitis C was such a strong virus
  like I know now. I found that out too, very soon
  afterwards, that the virus was much stronger than
  AIDS. 62

29
knowledge uncertainty

• emphasis on self-learning
• I started reading a bit about it. I started to
  understand. I started getting little pamphlets.
  59
• I started learning with him brother, just in
  case. He was taking books, studying it. Thats
  how I was educated together with him on hepatitis
  C. 62
• emphasis on alternative risk rationalities
• trust
• hygiene

30
hygiene and the body

• scientific and everyday
• Theyre clean people. Their flat is clean. They
  are hygienically clean. They bath every day and
  things like that I know thats stupid, and I
  know Im fooling myself, but thats the way it
  was. 42.
• I think that diagnosis came about when I
  wasnt using sterile water. I was taking water
  out of the toilets and things like that, and
  using that to inject, and I think thats how I
  got hep C It could have been either that or
  finding somebody elses blood or something in one
  of the packets Or it could have been just using
  a very, very old syringe where the blood has gone
  off 50

31
hygiene and the body

• symbolic and knowledge ambiguity
• If your needle is dirty. If anything is dirty.
  It is much easier transmitted than HIV. You know
  how HIV is transmitted? Through blood. Hepatitis
  C is a different system. Its transmitted
  through dust, through this and that. 62
• I think I got hepatitis on my own. The heroin
  itself was dirty, in itself, and you can get it
  from it. Its not necessarily from someone else
  or from a non-sterile needle. The heroin is dirty
  in itself, and you can get hepatitis C from the
  dirt. 62

32
hygiene and the body

• blood awareness
• many not mindful of blood during habitual
  injection
• process of desensitisation makes blood
  unnoticeable
• Ive been doing it for so long, its part of the
  procedure You get desensitised to it all. Most
  people just think of the whole thing. When youre
  doing drugs and that, its something that you do
  every day, so you sort of switch off. 52

33
hygiene and the body

• unseen blood
• unattainable health promotion and anxiety
• I find that the idea of unseen blood
  frightening. Really scary. And its not something
  youd normally think about it. You know, when you
  think about normal things, maybe ways of sharing
  when you cut yourself. 41

34
trust

• trust fuses with hygiene
• trust tames uncertainty, as reduced risk
  sharing
• trust a substitute for knowledge for what is
  clean
• I know that she doesnt share with anyone
• Hes dead serious about hygiene
• We were living like families. We shared foods,
  clothes, beds

35
trust

• mistaken trust
• trust relations are fragile, a partial solution
  to risk
• mistaken trust rationalised through luck, fate,
  disruption rather than volition and calculus
• I have C. I got it last year from my own
  brother. He was using syringes from people he
  knew had C, and he lied to me that the gun
  syringe was new, and then we poured from one
  gun into the other through his needle and thats
  how I caught it. 62

36
risk environment

• relative risk and disruption
• habituation of relative risk
• When you take drugs all the time, you dont
  really think youll live long enough to die of
  hepatitis C Ive had seven overdoses, and I told
  myself that I would die of that much sooner than
  I would die of hepatitis C. 59
• Most people think that Hep C just means that
  youre more likely to die of liver cancer, but
  then they joke that theyre more likely to die of
  lung cancer first. 49

37
risk environment

• homelessness
• disruption of individual capacities and good
  intentions
• I live in an apartment, I have four walls, I
  have all my stuff, Im clean. But when youre in
  the streets, all you have is a backpack, and what
  you have you share cause thats all you have.
  59

38
risk environment

• policing
• hurried injection, safety short-cuts
• fear of interruption, disruption or arrest
• I didnt go to the health department, the place
  that gives you swords syringes for free,
  because the police might stand there. If I came,
  I would be arrested. 58
• They stop me. I took out my equipment and all,
  and they started beating me. Cops are so bigoted
  here. 63

39
risk environment

• gendered risk
• everyday violence through parasitical relations
  
• hepatitis C gendered risk embedded in cultural
  scripts
• I remember my first time getting high. It was
  with little Tommythey say he is HIV positive
  now. It is not a good situation not knowing how
  to hit yourself. He had to prepare the shot and
  hit me. He grabbed the only syringe we hadit was
  already fucking used. I didnt know what to do.
  35

40
risk environment

• gendered risk
• everyday violence through parasitical relations
  
• hepatitis C gendered risk embedded in cultural
  scripts
• Its the same for everyone out here. The guys
  like it this way. They like the feeling of having
  all that control over somebody. I mean its a
  really big amount of control. You are controlling
  how high someone gets how sick someone gets. It
  makes the guys feel like the girl wont leave.
  They are bound into that relationship. 35

41
risk environment

• reduced agency, accounting
• risk reduction unpredictable threatened by
  unexpected
• risk despite best intentions and good plans
• risk through forces beyond control (withdrawal)
• risk as good or bad luck, as accidents, as
  fate
• accounting for risk, preserving moral integrity

42
responsibility

• self-learning, self-care
• They literally learn themselves, do you know
  what I mean?... You just teach yourself 42
• If you want to inject the basically you got to
  know what youre doing otherwise people are going
  to take the piss out of you basically. 42
• I knew about AIDS but I didnt know about B and
  C. I didnt know that much. And then I went to
  the clinic for infectious diseases, primarily to
  see how you could get it, and what the
  consequences of the hepatitis C were. 62

43
responsibility

• irresponsible past, responsible present
• At the start I would have used anyones needle
  because I was really, really unaware of anything
  about drug use. 65
• I am very safe with everything I do. Like even
  using myself, I use everything brand new. If
  someones got a dirty fit syringe, they change
  it over to their new fit and stuff like that. Any
  bit of blood on it, Im not going anywhere near
  it.65

44
responsibility

• irresponsible other
• others are less careful infection as moral
  retribution
• You know, there was people in our social group
  that were a lot less careful and used a lot more,
  probably with a wider range of people as well,
  but didnt get it hepatitis C. It seems quite
  unfair that, you know, this friend and I were
  both singled out. 65
• They get into the skip and get the syringes. So,
  Ill shoot with my new syringe and throw it away,
  and hell take it regardless Even if he knew I
  had C hed take it! 63

45
responsibility

• moral virtuosity and altruism
• I will carry clean ones with me all the time.
  Just to give someone a clean one. 65
• You can spread it too. You have to be careful
  too, so that you dont give it to other people.
  59
• I would give them my fits syringes. Even if it
  was my last one. As long as I know I got one for
  myself. But I would not let them use, unless its
  their own fit syringe, you know what I mean.
  65

46
responsibility

• we are responsible for ourselves
• If Im having a taste with someone, Ill say
  Look, Ive got hep C, use the same spoon, its
  up to you. 44
• I dont care if they want to take mine
  syringes. I tell them I have hepatitis C,
  just as long as you know. 65 I dont care if
  they want to take mine syringes.
• Do you have an extra gun? syringe. I say, I
  have it, Ill give it to you, but I have
  hepatitis C. Dont tell me I havent told you.
  Im a very fair player. 62

47
conclusions

• inevitability of everyday hepatitis C risk
• ubiquitous, normalised, accommodated, lived with
• relative to HIV and other dangers, a risk
  accepted
• knowledge uncertainty, a risk beyond control
• symbolic systems, affective rather than cognitive
  risk assessment
• risk environment, beyond agency
• individualisation, self-care and blame, lack of
  community

48
challenges / implications

• hepatitis C is preventable despite risk
  acceptability
• hepatitis C is not an inevitable consequence of
  injecting
• hepatitis C is worthy of specific health
  attention
• hepatitis C is knowable and understandable
• hepatitis C is within our control
• hepatitis C is a shared responsibility
• hepatitis C is a risk concern but not
  stigmatising
• risk calculus is not enough
• engage with injector narratives of hygiene,
  trust, fate
• target hepatitis C specific interventions
• combine community action with structural
  intervention