Journal of Substance Use, February 2012; 17(1): 32–40

ISSN 1465-9891 print/ISSN 1475-9942 online © 2012 Informa UK Ltd.DOI: 10.3109/14659891.2010.513757

TJSU1465-98911475-9942Journal of Substance Use, Vol. 1, No. 1, Aug 2010: pp. 0–0Journal of Substance UseORIGINAL ARTICLE

Hepatitis C treatment and injecting drug users in Perth, Western Australia: Knowledge of personal status and eligibility criteria for treatment

HCV and IDU: Status and treatment eligibilityS. J. Carruthers & C. RyanSUSAN J. CARRUTHERS1 & CHRISSY RYAN2

1National Drug Research Institute, Curtin University, Perth, WA, Australia, and 2West Australian Substance Users Association, Perth, Western Australia

AbstractBackground: Few injecting drug users (IDU) in Australia take part in antiviral therapy for chronichepatitis C (HCV). To assess whether IDU are aware of the eligibility criteria for treatment and theirpersonal HCV status, we surveyed 78 IDU attending the fixed-site needle exchange in the city ofPerth.Method: Participants were eligible for the study if they self-reported having ever been diagnosed asHCV antibody positive. Each participant completed a semi-structured questionnaire administered bya peer HCV educator at the needle exchange.Results: Knowledge of personal HCV status was poor with more than half of the group not knowingthe purpose of a polymerase chain reaction test. Knowledge of treatment eligibility was also poorespecially around issues relating to alcohol consumption, the need for a liver biopsy, and treatmentduring pregnancy.Conclusion: Up-to-date information about eligibility criteria for HCV treatment has not filtered downto this group of older IDU. Furthermore, knowledge of personal HCV status (chronic infection andinfectivity) needs to be improved. Informed decisions about treatment cannot be made if knowledgeof status is poor and IDU are not familiar with treatment eligibility.

Keywords: Hepatitis C, antiviral treatment, knowledge, injecting drug users.

Background

Hepatitis C (HCV) is a blood-borne infection affecting approximately 170 million peopleworldwide (World Health Organisation, 2000). Acute infection with HCV is frequentlyasymptomatic and 50 and 75% of acute cases become chronic after a period of 6 months.Chronic infection results in moderate to severe morbidity in up to 30% of patients andcomplications of chronic HCV (cirrhosis and hepatocellular cancer) are the leading causeof approximately 30% of liver transplantations in the developed world (Bonkovsky &

Correspondence: Dr Susan Carruthers, National Drug Research Institute, Curtin University, GPO Box U1987, Perth, WesternAustralia 6845, Australia. Tel: +61 8 9266 1604. Fax: +61 8 9266 1611. E-mail: S.Carruthers@curtin.edu.au

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HCV and IDU: Status and treatment eligibility 33

Mehta, 2001; Buti, San Miguel, Brosa, Canases, Medina, Casado, Fosbrook, & Esteban,2005; Gidding, Topp, Middleton, Dore, Robinson, Maher, Kaldor, Dore, & Law, 2008).Although the incidence of HCV in Australia has dropped from a peak of 4.4 cases per100,000 population in 2001 to 2.6 per 100,000 in 2006, the number of people expected todevelop HCV-related cirrhosis is estimated to increase fourfold by 2020 (Matthews,Kronborg, & Dore, 2005b; Gidding et al., 2008). The population most affected by HCVare current and past injecting drug users (IDU); current IDU account for more than 90%of incidence cases whereas 80% of prevalent cases are associated with past injecting.

In Australia, HCV antiviral treatment, a combination of pegylated interferon and ribavi-rin, is available to those considered eligible under the Highly Specialised Drug TreatmentScheme (S100) criteria. Two major changes in the eligibility criteria for HCV treatmenthave increased public accessibility over the past decade. In particular, the two criteriareported by IDU to create a barrier to seeking treatment (the need to be drug free for aperiod of 12 months and the need for a liver biopsy) have been modified. Prior to May2001, a 12-month period of abstinence from injecting drug use was necessary. Thisrequirement was based on a general belief that illicit drug use would affect compliance withwhat is a difficult and often protracted treatment regime. However, Australian and interna-tional research has shown that current IDU can comply with, and successfully complete,HCV treatment if sufficient support services, including access to illicit drug treatment, areavailable (Matthews, Kronborg, & Dore, 2005a; Sylvester, 2005; Ebner, Wanner,Winklbaur, Matzenauer, Jachmann, Thau, & Fischer, 2009; Freedman & Nathanson,2009). The second change in eligibility occurred in 2006 when the requirement for a liverbiopsy during the assessment for treatment phase was removed. Pharmaceutical data showa sharp increase in number of treatments prescribed following this latest change (Giddinget al., 2008). However, among current IDU less than 1% report having received treatment:regular surveillance activities indicate there has been little change in this figure over thepast 5 years (National Centre for HIV Epidemiology and Clinical Research, 2009).

Increasing uptake of treatment is a strategy recommended in second National AustralianHepatitis C Strategy as “central to the response to hepatitis C in Australia” (Common-wealth Department of Health and Ageing, 2005: 17). The aim of increasing the numbersof people treated is to reduce future chronic health issues for the individual and for thehealth sector. Out of every 100 cases of chronic HCV, an estimated 5% will develop themost severe consequences of chronic HCV, hepatocellular cancer or cirrhosis, and a fur-ther 35% can expect to experience the more insidious but nonetheless debilitating effectssuch as lethargy, chronic pain, and cognitive effects of continuing infection and resulting insignificant loss of quality of life (Batey, 2003). There are a number of factors which influ-ence the uptake of HCV treatment among IDU. There is a growing Australian literature,most of it arising from the eastern states of Australia, investigating and discussing the lowlevels of participation of current IDU in HCV treatment: factors such as lack of awarenessof treatment options; not experiencing symptoms of chronic HCV; discrimination arisingfrom within the healthcare system; a fear of the possible severe side effects of treatment; aswell as a limited service infrastructure (number, capacity, and location of clinical services)and staff to deliver services have been identified as barriers to treatment for IDU (Doab,Treloar, & Dore, 2005; Grebely, Genoway, Raffa, Dhadwal, Rajan, Showler, Kalousek,Duncan, Tyndall, Fraser, Conway, & Fischer, 2008; Treloar & Fraser, 2009). The currentstudy examined knowledge of the eligibility criteria for HCV treatment and knowledge ofpersonal HCV status as or reported by IDU located in metropolitan Perth, WesternAustralia.

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34 S. J. Carruthers & C. Ryan

Method

A cross-sectional survey of current IDU (injected at least once in the 3 months prior tointerview) was conducted using a semi-structured interview schedule. The structuredschedule recorded basic demographic information, a history of drug use, and current druguse patterns and HCV history. The semi-structured segment investigated interest in orpast involvement in HCV treatment. Knowledge of eligibility criteria for receiving treat-ment was measured through a series of true/false questions. The interview schedule was anadaptation of the one used by Doab et al. (2005) in their study of barriers to treatment inSydney, Australia. Minor adjustments were made to ensure the schedule was relevant tothe Perth metropolitan area. The schedule was piloted on 10 subjects and further minorchanges were made.

To be eligible to take part in the study, respondents had to self-report as having beendiagnosed with HCV (confirmatory tests were not carried out). The study group wasrecruited primarily from the West Australian Substance Users’ Association (WASUA), thesole peer community group/primary needle exchange in Perth. Interviews were conductedby two Hepatitis C peer support workers at WASUA. Clients of WASUA who expressedan interest in the study and who were subsequently found to be eligible were enrolled andtook part in a 45 min interview for which they were reimbursed $30 for travel expenses.The study was approved by the Curtin University Human Research Ethics Committee.

Results

The study group consisted of 73 current IDU who self-reported as infected with HCV.Two-thirds of the study group were male and the average age of participants was 36 years(mode 29; range 18–54). Of the group, 10% identified as aboriginal. The majority hadcompleted 10 years or more of schooling and more than half had post-school qualifica-tions, the majority with trade qualifications. Most (70%) were living in rented accommo-dation with a further 22% residing in boarding houses at the time of interview. The vastmajority (81%) were unemployed and derived the majority of their income from socialsecurity payments.

The study group was found to be poly-drug users, using a combination of heroin, phar-maceutical opioids, and meth/amphetamine-based drugs (see Table I). A significantminority (21 and 33%, respectively) were injecting illicitly obtained buprenorphine andmethadone, and more than 80% used cannabis on a regular basis. The frequency with

Table I. Reported drug use and drug injection over past 6 months

Drug type Used past 6 months Injected past 6 months

Heroin 67.9 69.5Other opioids 56.1 61.0Amphetamine 59.5 61.0Methamphetamine 77.4 76.8Methadone 23.8 23.2Buprenorphine 34.5 32.9Benzodiazepines 64.3 8.5

Cocaine 10.7 7.3Cannabis 82.1 n/a

Multiple response table.

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HCV and IDU: Status and treatment eligibility 35

which drugs were injected varied from “not in the past month” to “more than three times aday.” The mean number of injections reported per week was 6.8, with a median of 4 and amode of 2 injections. The mean duration of injecting drug use for the study group was17 years (median 16 years; mode 10 years; range 32 years). Of the group, 26% (n = 19)were on an opioid substitution treatment: 12 on methadone; 6 on buprenorphine; and 1with a naltrexone implant.

Hepatitis C status

Participants were asked to describe their HCV status as chronic or resolved; 29%described themselves as chronically infected and 26% as having a resolved infection. Thosewith a resolved infection were aware that they were at risk of reinfection. The remaining43% indicated they did not know their status. This group was classified as “statusunknown.”

The interview included questions relating to knowledge of polymerase chain reaction(PCR) tests: whether respondents recalled having a PCR test, the outcome of the test, andthe function of the test.

Only 19% of participants could describe the function of a PCR test. The remainder weregiven an explanation of the function of a PCR described as “a test to see whether the virusis present in the blood—when the virus is present this means you are likely to have achronic infection and are at risk of developing side effects of chronic HCV.” This descrip-tion resulted in 10% of previously “unknown status” participants (see above) indicatingthey were either chronically infected or had a resolved infection. Nevertheless a third of thegroup remained unclear about their status. These findings are shown in Table II.

Duration of HCV infection for the study group ranged from 1 year to 24 years (mean12.1 years; mode 13 years; median 12.5 years). Those who reported having a resolvedinfection were removed from further analysis, leaving a study group of 58 IDU.

In terms of current symptoms of HCV, respondents were asked whether they had ever,or were currently experiencing, the four most common symptoms of HCV infection (seeTable III).

From the findings reported in Table II it would appear that the more common symp-toms of HCV infection were frequently experienced by this group of IDU. However, some

Table II. Self-reported HCV status before and after explanation of PCR

Described status Initial (%) After PCR description (%)

Chronic 29 38Resolved 26 28Do not know 43 33

Table III. Reported symptoms of hepatitis C infection (n = 58)

Symptom Ever experienced (%) Currently experiencing (%)

Fatigue 77.6 50.0Liver pain 53.4 29.3Lack of concentration 55.2 31.0Aches and pains 69.0 32.8

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36 S. J. Carruthers & C. Ryan

respondents noted they could not be sure whether the symptoms they were experiencingwere because of their HCV or their lifestyles in general.

Participants were asked about the frequency of their visits to a general practitioner (GP)for the purpose of monitoring their HCV or for general health issues. The findings, pre-sented in Table IV, suggest that participants were significantly more likely to visit their GPfor general health matters as opposed to matters related to their HCV infection.

In the next section, participants were asked whether they had ever sought HCV treat-ment, whether they had ever been offered HCV treatment, whether they had undergonetreatment (completed or not completed), and whether they were interested in pursuingtreatment in the future. Four participants had undertaken treatment, three successfullyand one who terminated because of severe depression. The majority of the remaining par-ticipants (>80%) indicated they would be interested in treatment in the future, and 65%recalled either their GP or a needle and syringe program (NSP) worker engaging them indiscussions about HCV treatment in the past. Many of those who recalled conversationswith doctors about treatment indicated their last contact was more than 5 years ago andmay have contained information which is now out-of-date.

Past research has shown that IDU are not well informed about HCV or its treatment.Thus, knowledge about current eligibility criteria for HCV treatment was investigated.This was achieved by asking a series of true/false questions using past, existing, and falsecriteria. As illustrated in Table V, there remains some misinformation/lack of awarenessabout some of the criteria.

A small number of respondents remained unaware that HCV therapy can be taken inconjunction with methadone or buprenorphine or that past or current injecting drug use isnot an exclusion factor. One in five believed that being co-infected with HIV would auto-matically exclude one from treatment and almost two-thirds believed that any level of alco-hol use, but, in particular, levels considered unsafe by the NHMRC Guidelines, wouldrender them ineligible (National Health and Medical Research Council, 2001). Despitethe removal of the liver biopsy criteria in 2006, over half of the study group (52%) believeda biopsy was still essential.

Half of the study group (51%) correctly indicated that having cirrhosis would make oneineligible for treatment and 60% indicated the same for liver failure. Only a quarter ofrespondents were aware that treatment and pregnancy were not compatible.

Discussion

The group recruited for this study was similar to that recruited for the Annual Needle andSyringe Program (ANSP) survey in 2007 and 2008 (National Centre for HIV Epidemiol-ogy and Clinical Research, 2009) in terms of their age (median age: ANSP 35; current

Table IV. Frequency of visits to general practitioner

Visit frequency For hepatitis C For general health

Never 54.1 8.1*

1–3 monthly 21.6 72.96 monthly 10.8 10.8Yearly 13.5 8.1

*Chi-square 45.6; df = 3; p = 0.000.

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HCV and IDU: Status and treatment eligibility 37

study 36), gender distribution (male: ANSP 65%; current study, 66%), last drug injected(heroin: ANSP 31%; current 32%), and duration of drug use (median: ANSP 15 years;current study 16 years). The median number of years infected with HCV, not measured inthe ANSP, was 12.5 (range 23 years).

The major aim of this study was, first, to assess each respondent’s level of knowledge of per-sonal HCV status and, second, to assess their knowledge of the eligibility criteria for treatment.

Overall, knowledge of personal HCV status was poor. Almost half of the study groupcould not describe their status other than to say they were HCV “positive” or they “hadhepatitis C.” Less than one in five respondents understood the significance of a PCRtest, a finding similar to that found in a Melbourne study where 23% (n = 50) did notknow whether they had had a PCR test (McNally, Temple-Smith, & Pitts, 2004).Knowledge of personal HCV status is critical if IDU are to make informed decisionsabout reducing transmission associated with injecting risk behavior or about whetherthey should consider treatment. Ideally, this information should be given by the testingphysician or clinic. The importance of this information and its role in the care of thosewith HCV is well recognized and stated in the National Hepatitis C Strategy (Australia)as follows:

The diagnostic event shapes how people with hepatitis C understand their infection. Itis essential that diagnosis is handled sensitively and that all patients being tested receiveinformation about hepatitis C and the support services available to them. (p.7)

Whether respondents were not given adequate information at the time tests were con-ducted, or did not retain the information they were given, is not known. It is also importantto note that the mean duration of HCV infection for the study group was 12.5 years andmuch has changed in terms of treatment over the past decade. However, the frequencywith which respondents visited their GP specifically in relation to their HCV infection waslow, suggesting that regular monitoring of infection in this group was not occurring.

Table V. Knowledge of eligibility criteria for hepatitis C treatment

Condition Make ineligible Do not know

Current injector 16.1 0Having cirrhosis 51.8 7.1History of IDU (past IDU) 16.1 0Being in liver failure 60.7 3.6Drinking any alcohol 62.5 3.6>3 standard drinks/day for women 73.2 1.8>7 standard drinks/day for men 73.2 1.8Co-infected with HIV 20.7 3.6Co-infected with hepatitis B 7.1 5.4For women—current pregnancy 27.6 5.4Being on methadone 10.7 1.8Being on naltrexone 7.1 3.6Being on buprenorphine 5.4 3.6Having no symptoms of hepatitis C 12.5 0Smoking tobacco 3.6 0History of depression 17.9 7.1

Note: Conditions in bold render an individual ineligible for HCV treatment.

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38 S. J. Carruthers & C. Ryan

Only three of the criteria listed in Table IV—having cirrhosis; being in liver failure; and,for women, being pregnant—would absolutely exclude a person from HCV treatment.Current guidelines recommend that requests for treatment be assessed and considered ona case-by-case basis using a whole of team approach, including drug and alcohol workers,psychiatrists, support networks and services, and liver specialists (Australian Society forHIV Medicine, 2009). Although the other conditions listed in Table IV would need to beaddressed in the decision to consider treatment, they would not automatically render aperson ineligible.

Knowledge of the eligibility criteria for HCV treatment was variable. In particular,information about the removal of the need for a liver biopsy in the lead up to treatment hasnot filtered down to this group. About half believed that a liver biopsy was still essential inthe assessment process, and although a liver biopsy may be necessary or indeed recom-mended, other diagnostic tests are often sufficient to assess eligibility for treatment.

A significant proportion of the study group (67%) thought that the consumption ofany alcohol or amounts exceeding safe drinking guidelines (NHMRC, 2001) wouldmake one ineligible for treatment. The majority of literature on issue of alcohol andHCV indicates alcohol hastens the progression of HCV disease, and recommendationssuggest that abstinence or low level of drinking is advisable. The National Institutes ofHealth in the U.S. states “heavy alcohol consumption of >80 g/day seriously compro-mises HCV treatment” and recommends “alcohol abstinence is strongly recommendedbefore and during antiviral therapy” (National Institutes of Health, 2002). However, inan Australian trial of monotherapy for acute HCV infections, a case study report demon-strates that with a multidisciplinary approach those with a heavy alcohol intake can suc-cessfully undergo treatment and at the same time reduce alcohol consumption (Nguyen,Dore, Kaldor, & Hellard, 2007).

One in 10 thought having no symptoms of HCV would render them ineligible for treat-ment. However, it is now known that the frequency and severity of symptoms of chronicHCV do not correlate well with the level of liver fibrosis (Dore, 2001; Batey, 2003).

Only one-quarter (23%) of respondents correctly identified that pregnancy would renderone ineligible for treatment. This eligibility criterion, which includes cases where contra-ception is considered to be inadequate, is one of the absolutes. Ribavirin is known to beteratogenic; hence, treatment is contra-indicated during pregnancy and, to ensure thatpregnancy does not occur during treatment, women wanting treatment must demonstrateadequate contraception for the duration.

Although the vast majority of respondents knew that HCV treatment and methadone orbuprenorphine could be taken together, a small number were either unsure (4%) orthought it would make them ineligible.

One in five thought having a history of depression made them ineligible. Although one ofthe major side effects of treatment is depressive illness, it can be managed with medicationand support. It should be noted, however, that depressive symptoms are one of the mostcommon causes of treatment termination and many of those who undergo treatment willbe prescribed antidepressant medication.

The majority of respondents were aware that abstinence from drug use was no longer anessential eligibility criterion. We did not, however, assess the level of drug use they consid-ered reasonable to deal with while having treatment.

Interest in future treatment for HCV was high at 80%, a level similar to that found inother studies (Doab et al., 2005). Although there have been studies measuring interestin future HCV treatment, none have been in a position to follow-up participants to

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HCV and IDU: Status and treatment eligibility 39

assess whether being informed about treatment options actually resulted in them tak-ing steps to be assessed for treatment. In this study, some participants had competinginterests such as daily drug use, which would likely discourage them from seekingtreatment. It would be useful in future studies planning to assess knowledge, and inter-est in treatment could add a component which allowed for the follow-up of partici-pants to report on actions.

This study has a number of limitations. First, the study group was small (n = 73) and,second, it was primarily recruited from the fixed-site needle exchange. Therefore, the find-ings cannot be extrapolated to all HCV-positive individuals who inject in Perth. However,the respondents in this study were similar in terms of drug use and basic demographics tothose taking part in the ANSP survey and thus may be representative at a broad level.Another limitation was the lack of serological testing to confirm self-reported HCV status.All participants in the study were current injectors and some of those who reported theyhad a resolved HCV infection may have been reinfected. However, given that a third of thegroup did not know their status, future studies need to rely on serological testing to con-firm self-reported findings.

Given the relative infrequency with which IDU in this study visited a health servicespecifically for HCV, some of the findings are not surprising. With increased awareness oftreatment and an increase in the number of IDU enquiring about treatment, misconcep-tions about eligibility should be corrected. Peer workers at the local drug user group(WASUA) and health professionals in services frequented by people who inject will need toplay a major role in ensuring that information about criteria is widely disseminated amongIDU.

It would be naïve to think that the mere provision of information will attract IDUinto HCV treatment. Many IDU will have competing priorities for their time andattention which will render them unsuitable or uninterested in treatment at the currenttime.

However, if their knowledge of HCV is such that they do not even know if they arechronically infected, they will not even have the opportunity to make an informed decision.

Of greater concern is the apparent lack of management of HCV infection. This studygroup was rarely visiting their GP for management of HCV. This may be related to thefairly long duration of infection of this group of older IDU. The information given at thetime of diagnosis is likely to be out-of-date. New recommendations regarding the manage-ment of chronic HCV for those who do not wish to enter treatment are urgently needed.Without this, we are likely to have a large number of seriously ill IDU presenting to hospitalsover the coming decades.

Declaration of interest

The authors report no conflicts of interest. The authors alone are responsible for thecontent and writing of the paper.

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