Improving access to hepatitis c testing for pwid

POLICY POSITION PAPER

Improving Access to Hepatitis C Testing for People Who Inject Drugs

APRIL 2008

Summary Approximately 200,000 people in Australia are chronically infected with the hepatitis C virus1, creating a health and social burden on those with the virus, and an economic burden on the health system. Effective testing is available for hepatitis C though its availability is restricted to at-risk populations due to real and perceived barriers. By removing many of these barriers, an effective testing program can assist to reduce new hepatitis C infections, educate those at risk of infection and increase the uptake of treatment for hepatitis C.

Key Points •

• • • •

•

Discrimination and stigma associated with injecting drug use and hepatitis C infection are major barriers to people accessing hepatitis C testing in mainstream medical environments.

Many other social, cultural, practical, personal and psychological barriers exist to prevent people accessing hepatitis C testing.

Home test kits for hepatitis C have many drawbacks and are not a good solution to the problem of accessibility.

Widespread free, de-identified access to hepatitis C testing will assist to remove a number of barriers to testing.

Hepatitis C testing and counselling that is delivered within a peer-based environment provides a non-threatening environment in which at-risk people can not only be tested, but discuss a range of issues associated with hepatitis C disease progression, prevention, transmission, treatment, health maintenance and monitoring, etc.

Testing and counselling is best provided in a setting in which people are comfortable, such as a peer-staffed NSP or drug user organisation.

Introduction In Australia, approximately 200,000 people are living with chronic hepatitis C infection, with around 10,000 new infections occurring annually. Of these, approximately 88% occur amongst people who inject drugs through the sharing and/or re-using of injecting equipment2.

Many people, particularly those recently infected, are not aware of their hepatitis C status and are therefore more likely to engage in or continue unsafe injecting

1

Hepatitis Australia, www.hepatitisaustralia.com HCV Projections Working Group: Estimates and Projections of the HCV Epidemic in Australia 2006, National Centre in HIV Epidemiology and Clinical Research, 2006.

2

Policy Position Paper - Access to Hepatitis C Testing

2

practices. In addition, those people who are unaware that they have hepatitis C will not seek specific medical and health support advice.

Increasing access to testing for hepatitis C would, therefore, have the potential to both reduce the number of new infections and improve health-related outcomes for people with hepatitis C. In May 2007 the second (revised) National Hepatitis C Testing Policy was released. A key principal of this paper was to propose a number of guidelines that should be applied to hepatitis C testing at a national level. These included that “testing is accessible to all those at risk of HCV infection”. The paper went on to say that, “[w]here barriers to testing exist, special provisions may need to be made to facilitate access”3.

While the National Hepatitis C Testing Policy (2007) acknowledges a number of potential barriers, AIVL believes that more work needs to be done, not only to identify and understand the potential barriers people have to being tested for hepatitis C, but to address them in a meaningful and effective manner. Such a response needs to come from Government at all levels, with appropriate funding and political support. To illustrate this point, the second Testing Policy paper identifies a lack of implementation of the previous policy (2002) as a primary concern.

Why AIVL? AIVL is in a unique position to explore the issue of expanding hepatitis C testing within communities of people who inject or have injected drugs due to its standing and representation within these communities and its member network of State and Territory drug user organisations. AIVL has explored the issues around hepatitis C testing in people who inject drugs in conference presentations, educational resources and AIVL’s national magazine, Junkmail. In addition, AIVL has representation on ministerial advisory committees and the National Hepatitis C Testing Policy Steering Committee.

Discussion Barriers to testing A variety of barriers to hepatitis C testing exist for people who do or have injected illicit drugs. These barriers may be real, implied or perceived, though all act as genuine impediments to people seeking testing for hepatitis C.

3

National Hepatitis C Testing Policy, Hepatitis C Subcommittee of the Ministerial Advisory Committee on AIDS, Sexual Health and Hepatitis and the Blood Borne Virus and STIs Subcommittee of the Australian Population Health Development Principal Committee, 2007.

Policy Position Paper - Access to Hepatitis C Testing

3

Discrimination and Stigma A major barrier to testing is that of discrimination and stigma associated with injecting drug use and hepatitis C infection. A report released in 2001 by the AntiDiscrimination Board of NSW found that: “[H]epatitis C related discrimination in health care settings is widespread and discrimination in employment is also commonplace. The Enquiry has heard a wide range of examples of discrimination experienced by people with hepatitis C, such as people being rejected by family and friends, ostracised in workplaces and communities, denied life insurance, and terminated from employment.”

In addition: “[T]he stigma associated with injecting drug use often leads to discrimination against people who have a history of drug use, currently inject drugs or are on drug treatment programs. Such discrimination is widespread and has damaging consequences.”4 The issue of stigma and discrimination can be pervasive and does not necessarily have a basis of fact within particular health care providers or services. Many people who inject or have injected drugs have experienced negatively biased behaviour in a wide variety of settings and their fear of repetition of this treatment is both valid and understandable. This is not just an aversion to being tested in a mainstream health care setting, but that of having a positive result and then having to interact in a variety of social, family and professional settings as a hepatitis C positive person.

Other Barriers Many other barriers to hepatitis C testing exist and they cannot all be listed here.

They are individual and complex and are developed over time according to the experiences and perceptions of those for whom they affect. Below are some reasons for not being tested that have been cited by people at risk of hepatitis C infection: • • • • • •

Fear of a positive result and how that may affect self-identity and perspectives of personal health Shame and stigma associated with injecting and therefore avoidance of medical services Lack of knowledge of hepatitis C , the fact that testing is available and the benefits of testing Concern that a positive result will mean a push into treatment ( for hepatitis C and/or for drug use) An attitude amongst people who inject that “Everyone’s got it so why bother?” ( i.e. the perceived inevitability of infection) Lack of personal/social support if the result is positive

4

C Change – A report into hepatitis C related discrimination, Anti-Discrimination Board of NSW, 2001

Policy Position Paper - Access to Hepatitis C Testing

4

• • • •

Costs associated with accessing health services(e.g. transport and direct medical costs) Not considering self at risk (particularly amongst new injectors) Young people being on their parents’ Medicare card and fear of their test being discovered by parent/s More pressing and immediate personal matters at hand (health, housing, legal, monetary, drug-related, etc.)

The following anecdote indicates the complexities that can be involved in the decision to be tested for hepatitis C: I wish I didn’t get tested as early on as I did. I was the only one in my group of peers who got tested. At the time, I didn’t know a lot about hep C and was totally open and blasé about the whole thing. When my injecting friends knew, it made sense for me to always go last when sharing as those going before me had the attitude of ‘well, we don’t know if we have it, but you definitely do’. I do not believe that I would have re-used as much of other peoples’ equipment as I did if I hadn’t known my status.

- Female injecting drug user Home Testing Home-based testing kits for hepatitis C are currently available in a number of countries, including the United States. These tests kits are a blood collection kit that is then posted to a laboratory for analysis. The sample is identified by a code that the purchaser of the kit uses to access the test result. It is an antibody test only – i.e. it does not test for the presence of the hepatitis C virus, only for hepatitis C antibodies which indicate previous exposure to the virus5. A PCR test is then needed to determine if the person has a chronic hepatitis C infection.

While the home-based test kits may increase accessibility for a number of people, they are relatively expensive (around US$55) and they raise a number of issues related to pre and post test discussion (previously counselling), privacy and literacy.

There is a significant likelihood that the scope of the test may be misinterpreted and a positive test taken as a positive for chronic hepatitis C infection, rather than an indication of exposure only and not necessarily an active infection. There is already considerable confusion about the tests for hepatitis C – a home-based testing system has the potential to exacerbate this confusion.

There is also the issue of support that comes through pre and post test discussion and preparation for a possible positive test, as well as a negative result. All the issues raised and discussed during this time with a qualified pre and post test counsellor are foregone. People using a home-based test kit are not supplied with 5

Home Access Health Corporation, www.homeaccess.com/Hepatitis_C_Test.asp

Policy Position Paper - Access to Hepatitis C Testing

5

comprehensive information on available support, further testing, counselling and hepatitis C treatment options. Neither can they be provided with transmission prevention information to either keep themselves safe or prevent passing hepatitis C on to others.

Additionally, the instructions and other information supplied with the kits may not be at a level of literacy appropriate to some people who may access them. This can obviously lead to confusion about the test itself and what the results mean.

The home-based kits cannot guarantee an uncontaminated sample, nor can they guarantee anonymity (although they claim to) as the test result access code is included in the test kit and can be accessed by people other than the test kit purchaser. The onus is on the kit purchaser to keep the code secure, rather than security (anonymity) been built into the system.

Anonymous Access to Testing The National Hepatitis C Testing Policy (2007), in its guiding principles, states that “to facilitate access to people who might be reluctant to seek hepatitis C testing, free de-indentified testing should be available from a number of health care settings in each jurisdiction6�.

In order for such a scheme to be effective, testing would need to be locally situated for the majority of people wanting to use the service. Due to monetary constraints on many people who inject drugs, travel options are limited and services would need to be within local bus travel distance in metropolitan areas and centrally located in rural communities.

While hepatitis C is nationally a notifiable disease, there is no requirement for those people being tested to provide any identification or personal details. Free and deidentified testing assists to remove the barriers of both cost and lack of anonymity, if it can be made geographically accessible and if the target populations are aware that it is available.

Young people in particular have identified a need for anonymous testing as most young people under 16 years are not able to hold their own Medicare card. The need to use their parents’ card instils a fear that a record will be kept of their test that is accessible by their parent/s.

Need for Peer Supported Testing The need for a peer-supported hepatitis C testing procedure (including actual testing and pre and post test discussion) was identified in a paper published in the Drug and 6

National Hepatitis C Testing Policy, Hepatitis C Subcommittee of the Ministerial Advisory Committee on AIDS, Sexual Health and Hepatitis and the Blood Borne Virus and STIs Subcommittee of the Australian Population Health Development Principal Committee, 2007.

Policy Position Paper - Access to Hepatitis C Testing

6

Alcohol Review (2002)7. This paper clearly made efforts to understand the dynamics and advantages of peer delivered services to injecting drug users.

The researchers found that, when it came to pre and post test discussion, “several IDUs [injecting drug users] told our peer worker that they would often ask a new counsellor if he or she had ever injected drugs and, if not, make an excuse and leave.

Their experience was that it was rare for people lacking direct knowledge of injecting drugs to fully appreciate their problems.”

The paper acknowledged that hepatitis C testing (and pre and post test counselling) is principally the domain of the medical community “which largely does not (and cannot be expected to) provide these services in ways which maximise uptake by IDUs” and that “primary NSPs should be resourced to employ a peer worker to deliver testing and counselling for hepatitis C”. Expanding peer-delivered services beyond NSPs to include other services that are accessible to people who inject drugs would further enhance the effectiveness of such a program.

As well as the obvious advantages of greater uptake of testing (decreased new infections and improved health outcomes), the researchers of this paper also found that “educational counselling received from a credible and empathetic peer is likely to be absorbed and acted upon.” This would include information on safer injecting, hepatitis C transmission, ongoing monitoring and support and treatment options. In this regard, other aspects of injectors’ lives could be discussed in a safe environment.

These issues may include legal, general health, housing, monetary, child custody, etc.

This would have the potential to alleviate these issues to some extent.

AIVL’s Position •

• •

AIVL supports the National Hepatitis C Testing Policy (2007) in rejecting the introduction and use of home testing kits in Australia, now and into the foreseeable future.

AIVL supports the widespread introduction of free de-identified testing for hepatitis C, where possible in collaboration with the following position point.

AIVL favours a model of hepatitis C testing that incorporates peers of people who inject/have injected drugs as pre and post test counsellors, as well as venpuncturists. The basis for this model is the location of testing in AOD and peer-based settings, including primary health services, drug user organisations, peer-supported NSP outlets and other suitable harm reduction-based services.

7

Peer-delivered hepatitis C testing and counselling: a means of improving the health of injecting drug users, Aitkin, Kerger and Crofts, Drug and Alcohol Review, 2002.

Policy Position Paper - Access to Hepatitis C Testing

7

Recommendations • • •

•

•

•

That home-based hepatitis C testing kits are not adopted in Australia, now or in the future.

That hepatitis C testing is widely made available as a free and de-identified service for people who inject or have injected drugs.

That hepatitis C testing is available in AOD settings, drug user groups and peer supported NSPs, and that both testing and pre and post test counselling (discussion) is performed by people that the target population/s can consider to be peers. This requires that funding is made available for the training of appropriate pre and post test counsellors and venepuncturists. Such peer supported testing requires relevant promotion in mainstream medical services, as well as the services delivering the testing.

In areas where peer-supported AOD services are not available, that peers are appropriately trained, employed and supported in mainstream community medical services.

That a national register is set up that details where peer-supported HCV testing can be accessed, and that this register is made available to relevant populations.

That appropriate and relevant education material on hepatitis C testing is made available to high risk and other at risk populations.

The Australian Injecting and Illicit Drug Users League (AIVL) is the national peak organisation representing the state and territory drug user organisations and issues of national significance for people who use of have used illicit drugs. AIVL is a peerbased organisation, which means it is run by and for people who use or have used illicit drugs.

Policy Position Paper - Access to Hepatitis C Testing

8