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cohealth provided a response to this inquiry by recommending that the Australian Government implement a range of measures to improve the national response to Hepatitis C. These measures included rapid point of care testing, the expansion of needle and syringe programs which includes extending the program to prisons, increased employment of peer workers in the sector and improved services for people living with hepatitis C.
Committee Secretary
Standing Committee on Health
PO Box 6021
Parliament House
Canberra ACT 2600
Dear Secretary
I am pleased to provide a submission on behalf of cohealth to the Standing Committee’s Inquiry into Hepatitis C. We note the terms of reference include the following:
There are clearly a range of effective interventions that can and ought be expanded to strengthen the national response. Cohealth is actively involved in the design delivery and deployment of many of these and therefore well placed to speak to efficacy of these measures.
For example the availability of new treatment regimes could greatly expand the number of people who are able to be free of the virus. The availability of Rapid Point of Care Testing (RPOCT) could be an integral part of a systemic approach to preventing, diagnosing , monitoring and treating people at risk or with hepatitis C.[i] The time for investigation is over. There is an urgent need for rapid point of care tests and new treatment regimes to be approved.
Needle and Syringe Programs (NSPs) have been an outstanding success in preventing new infections over time. This success should be built on by increasing access to clean equipment in areas population growth and where NSP provision has been historically poor, as well as among communities where access rates are lower.
Peer workers are a vital component of the alcohol and other drugs service system that has developed over recent decades. The work that has been done by Hepatitis Victoria in partnership with service organisations like cohealth to access peer networks for the distribution of clean injecting equipment and provide information about safe injecting practices is valuable and should be adopted across all jurisdictions. The use of peer networks in communities or population cohorts where there are lower access rates, such as Aboriginal and Torres Strait Islander people, is of particular value and should be embraced.
Prisons are a site of unacceptably high infection rates for hepatitis C and other blood borne viruses, and will continue to be as long as they continue to be a setting where injecting drug use occurs in a population without access to clean equipment. State and territory prison system managers in partnership with prisoner health services should be encouraged to undertake a program of work under the Fourth National Strategy in partnership with stakeholders to translate the harm minimisation approach into the custodial setting in a manner which is not detrimental to the safety of correctional officers.
Service users living with hepatitis C consistently report that the discrimination and stigma that they experience presents a significant challenge in their lives and undermine their health and wellbeing. In order to best understand the experience of life with hepatitis C it is useful to look from the perspective of the lives impacted.
Consumer voice
In preparing this submission cohealth staff were fortunate to be able to talk to one of our service users, Shane, whose story of life with hepatitis C is presented at Attachment 1. Shane’s story intersects with the failures of oversight that resulted in the Royal Commission into Institutional Responses to Child Sexual Abuse, while his experience of discrimination and vilification is a powerful example of the failure of community leadership in this area.
Shane’s story also shows the importance of well informed health workers delivering care and support with respect, while offering comfort, safety and dignity to service users as they move towards recovery and good health. I am proud to note the importance that individual health care workers at cohealth have played in Shane’s recovery:
“(t)he staff treat us with dignity which helps in keeping you well and self esteem feeling in yourself. Since I’ve been getting Hep C treatment at Healthworks, the holistic approach to my health has empowered me to get in contact with my birth mother.
I can’t think of any time in my life that I have felt this well and I firmly believe that it is through the clinic that has accepted me and treated me with dignity and respect that has enabled me to start to love myself as well. ”
I commend Shane’s story to the Committee and encourage you to consider any recommendations that you make with regard to the impact their implementation would have on the individual Australians who carry the burden of Hepatitis C each day.
In preparing this submission it became clear that there were some activities that cohealth could deliver so as to become a more effective partner in reducing the impact of hepatitis C across our community. Accordingly in making this submission to the Committee we offer an overview of some of the key features of our effort to support this important work
For our part cohealth will work over the life of the Strategy to:
Effort and budget allocation to continue to reduce the impact of Hepatitis C on the Australian community will be required across Governments, electoral cycles and in the face of different budget pressures. The ongoing bipartisan commitment to the harm minimisation approach which Is at the core of the Fourth National strategy is welcome. We look forward to seeing reports on implementation work under the Fourth National Strategy.
I thank the Committee for the opportunity to make this submission and join in the efforts across the country to reduce the impact of Hepatitis C. I look forward to reading your report on the vital work that will be undertaken under the Fourth National Hepatitis C Strategy. I would be pleased to discuss any element of it with the Committee in person and can be contacted at Lyn.Morgain@cohealth.org.au
Yours sincerely
Lyn Morgain
Chief Executive
Recommendation 1
That the Commonwealth Government approve new treatment regimes that will improve health outcomes for people with hepatitis C.
Recommendation 2
That the Commonwealth Government approve rapid point of care tests and new treatment regimes that will improve health outcomes for people with Hepatitis C.
Recommendation 3
That State and Territory Governments work to improve support for prisoners with hepatitis C and prevent new infections occurring in prison by translating the harm minimisation approach into the custodial setting to minimise the risk of harm to prisoners while not risking the safety of correctional officers.
Recommendation 4
That Governments prefer the use of community based settings for the delivery of treatment and support for hepatitis C given the reduced clinical oversight required for new treatment regimes.
Recommendation 5
That all jurisdictions establish a benchmark for growth in access to and use of sterile injecting equipment through the provision of NSPs in areas of high population growth.
Recommendation 6
That all jurisdictions commit to reducing the percentage of people who are re-using or sharing equipment to half the current rate (around 12.5-14% ) over the life of the strategy.
Recommendation 7
That all jurisdictions:
Recommendation 8
That all jurisdictions work together on a public education campaign co-designed with people living with Hepatitis C that aims to reduce the stigma and discrimination experienced by people living with hepatitis C.
In light of the recent release of the Australian Government’s Fourth National Hepatitis C Strategy, the Standing Committee on Health inquire into and report on:
B. Hepatitis C early testing and treatment options available through:
Despite the high price of new therapies, “it is likely that the general consensus, even among insurance companies, will be that the price of treating an individual “per SVR” is actually cost-effective when factors beyond the price of the drug alone are considered.” Gaetano (2014)
Emerging Interferon-free treatment regimes are expected to be of 12-24 week duration. Due to the significantly reduced risk of Interferon-related complications, the pre- treatment testing required is reduced and the need for psychological assessment would be eliminated unless clinically indicated for other reasons.
The need for testing while undertaking treatment would also be reduced as the complication risk is no longer applicable and treatment is for shorter duration.
Treatment can therefore ideally be managed, once initiated by specialist, in community settings by HCV S100 prescribers therefore reducing the need for hospital visits.
This cost reduction would be largely offset by the higher cost of interferon free regimens but with increased clinical effectiveness, lower side effect profile, and reduced workforce involvement we are likely to be well placed to increase our capacity to treat and therefore reduce disease progression and transmission as recommended in the national strategy. Additionally, our clients report that accessing treatment in a community setting is preferable to the hospital settings which create a barrier to accessing services. Hence the willingness of hospitals to base Hepatitis C clinics at our sites on a weekly basis.
Recommendation 1:
That the Commonwealth Government approve new treatment regimes that will improve health outcomes for people with hepatitis C.
In August 2014 Hepatitis Victoria released a position paper calling for the Victorian Government to undertake a rapid testing pilot for HCV in the western suburbs. A rapid point of care test (RPOCT) is a tool that enables screening for people who are at risk of Hepatitis C. This test detects HCV antibodies via a finger prick capillary blood sample at the time of presentation. RPOCT are currently used in a variety of settings in other countries including the United States with an accuracy of approx. 98% and have been found to be cost effective. This, in turn, has the effect of earlier detection, limiting disease progression and prevention of transmission to the at risk population.
The RPOCT enables practitioners to determine immediately if further investigation is required and limit loss to follow-up by allowing progression to HCV PCR (confirmation of current infection assay) testing at that visit. The test can be performed by non-clinical staff and integrated into a range of services such as drug and alcohol (AOD) and needle and syringe programs (NSPs) to increase screening of at risk populations. They enable opportunistic, targeted screening ,counseling and referral to treatment services.
The positive health outcomes that are likely to flow from improved surveillance and diagnosis – such as increased referrals for hepatitis C treatment for those with current infection, increases in safe injecting behaviour after being aware of status, reduced risk of transmission as a result of being aware of status, reduced risk of adverse health impact in the long term as a result of earlier access to treatment.
Saliva and pinprick samples for blood testing for hepatitis C screening will enable people at risk with poor venous access to be tested and followed up. This will assist in the diagnosis of those injectors that have more than likely been injecting for a long time and therefore more likely to have significant liver disease.
Point of care testing needs to be considered as an integral part of a systemic approach to preventing, diagnosing , monitoring and treating people at risk or with hepatitis C.
Through cohealth’s established needle and syringe programs, Primary Health Care Services for injecting drug users, treatment and support for people who use drugs and Integrated hepatitis C Clinics ,we are well placed to perform and evaluate such a study that will support expansion of HCV testing with a systemic approach to follow up and provision of ongoing referral into treatment and care. Expansion of HCV testing is crucial for providing early access points to care and address the increasing chronic liver disease burden on health services. Delays in approval of RPOCT will only increase the costs of long term management of Hepatitis C across the community.
Recommendation 2:
That the Commonwealth Government approve rapid point of care tests for hepatitis C to promote earlier detection and limit disease progression and reduce the risks of transmission to at risk populations.
Prisons are a site of unacceptably high infection rates for hepatitis C and other blood borne viruses, and will continue to be as long as they continue to be a setting where injecting drug use occurs in a population without access to clean equipment. State and territory prison system managers in partnership with prisoner health services should be encouraged to undertake a program of work under the Fourth National Strategy in partnership with stakeholders to translate the harm minimisation approach into the custodial setting in a manner which is not detrimental to the safety of correctional officers.
While treatment is effective, it does not offer immunity. Re-infection is a significant risk for people who are not able to use safe injecting practices because they lack access to clean injecting equipment.
Work to progress implementation of the Fourth National Strategy on Hepatitis C should include a particular focus and effort to engage with State and Territory managers of prisons and correctional health services. Action in the custodial setting is a vital element of the national effort to reduce the negative health impacts of Hepatitis C (and other blood borne viruses) across the community.
A review of International Research and Program Development on Prison-Based Syringe Exchange Programs by the National Drug and Alcohol Research Centre commissioned by the ACT Government found that ‘(t)he overall success of the 19 PSE (Prison Syringe Exchange) programs in Europe suggests that similar programs may be beneficial in an Australian setting.”(Rutter et al, 2001) The report identified the need for work to be undertaken to ensure the cooperation of prison staff in the development of the program.
cohealth recommends adoption of a transparent co-design process which brings together all stakeholders across the health and corrections systems with an interest in the issue including correctional services management, correctional health services management, custodial officers, health specialists, prisoners and prisoner advocates to establish a shared objective of translating the harm minimisation approach to drug use into the correctional setting.
If approached with goodwill the resulting service and program design that emerges would be a platform from which all parties can work to reduce the risks associated with hepatitis c and other blood borne viruses (BBVs) across the prison system for prisoners and those for whom the prison setting is a work environment.
Recommendation 3
That State and Territory Governments work to improve support for prisoners with hepatitis C and prevent new infections occurring in prison by translating the harm minimisation approach into the custodial setting to minimise the risk of harm to prisoners while not risking the safety of correctional officers.
In light of the recent release of the Australian Government’s Fourth National Hepatitis C Strategy, the Standing Committee on Health inquire into and report on:
C. the costs associated with treating the short term and long term impacts of Hepatitis C in the community
Making services accessible to people in their local community encourages greater participation, improved access to support, better promotion of the benefits of treatment adherence and a more normal interaction with health services given the lower levels of disruption to daily life that occur.
cohealth has a range of approaches for delivery of programs and clinics for people with Hepatitis C. The community setting provides a more flexible, accessible and supportive environment for the delivery of treatment, information and self-management support than alternative hospital based setting.
cohealth has developed partnerships with three Melbourne hospitals to deliver an appropriately supervised treatment programs for hepatitis C following attempts by hospitals to deliver the programs on hospital campuses. The original efforts resulted in low enrolments and low proportion attendance rates. The results of the partnership approach in the community setting included more participants being recruited and higher attendance rates among recruits.
“Choices” run by the Living Well program (early intervention in chronic diseases health coaching program) in partnership with Healthworks (primary health services for people who inject drugs) that has been delivered for several years. The outcomes from this group include increased knowledge of chronic disease self management, increased referrals for HCV treatment, increased mental health support/referrals.
Feedback from people who have attended the Choices program:
“I want to take action and not keep talking about treatment, but do something about it. Now that there’s a group I have been able to talk about it and feel like it’s time to move on.”
“I use to bottle things up inside, but after the groups I’ve realised it helps to talk.”
“This group is like my secret family.”
Recommendation 4
That Governments prefer the use of community based settings for the delivery of treatment and support for hepatitis C given the reduced clinical oversight required for new treatment regimes.
In light of the recent release of the Australian Government’s Fourth National Hepatitis C Strategy, the Standing Committee on Health inquire into and report on:
Methods to improve prevention of new Hepatitis C infections, and methods to reduce the stigma associated with a positive diagnosis through:
Needle and Syringe Programs (NSPs) have been an outstanding success in preventing new infections. This success should be built on by increasing access to clean equipment in areas of population growth and where NSP provision has been historically poor, as well as among communities where access rates are lower.
There is a need for greater access to NSPs in growth corridors where health infrastructure development often lags population growth. At the recent Victorian election cohealth called for funding for a new Primary Needle and Syringe Program (NSP) in the outer west of Melbourne, based around Sunshine. Ideally primary NSPs should be supported by dispensing machines and after-hours mobile services.
In support of this cohealth will over the life of the Fourth National Hepatitis C strategy endeavour to provide NSP (needle and syringe programs) at all of our service delivery sites across north and western Melbourne (across 14 Local Government areas)
Recommendation 5
That all jurisdictions establish a benchmark for growth in access to and use of sterile injecting equipment through the provision of NSPs in areas of high population growth.
Recommendation 6
That all jurisdictions commit to reducing the percentage of people who are re-using or sharing equipment to half the current rate (around 12.5-14% ) over the life of the strategy.
Peer workers are a vital component of the alcohol and other drugs service system that has developed over recent decades. The work that has been done by Hepatitis Victoria in partnership with service organisations like cohealth to access peer networks for the distribution of clean injecting equipment and provide information about safe injecting practices is valuable and should be adapted across other jurisdictions in a manner sympathetic to local context and opportunities for development. The use of peer networks in communities or population cohorts where there are lower access rates, such as Aboriginal and Torres Strait Islander people, is of particular value and should be embraced
cohealth has been working in recent times to improve access to clean injecting equipment by adopting the Harm Reduction Victoria Peer Networker Program (http://hrvic.org.au/safer-drug-use/the-peer-networker-program/)
The role of the peer networker is to share injecting equipment with their peers as they normally would. So we seek people who are well networked, and provide training and support about various harm reduction issues including Hepatitis C and other BBV transmission, management and treatment.
The approach recognises that resourcing peers is one of (if not the) the most effective ways to develop community knowledge and support safer practices as well as provide support in regards to engagement with health care. This is proving to be a very effective way of increasing access to clean equipment for people who for any number of reasons do not access needle availability programs.
Recommendation 7
That all jurisdictions:
cohealth uses an internally funded Innovation Grants process to encourage staff to develop projects to test new ideas and promote new ways to meet service user needs and/or which contribute to our culture of learning, inquiry and innovation.
As part of the 2014-15 Grants projects we have funded the Hepatitis See project which will produce a low literacy resource on hepatitis C for people affected by hepatitis C. The resource we are developing is to fill a gap in information for people with low literacy. There are many resources available on hepatitis C if you have high literacy, or access to an internet connection, however, there are few low literacy or pictorial guides available.
A low literacy resource/teaching aid will be an important tool in communicating information about hepatitis C and will be targeted at people who use drugs; people who access the above cohealth services. The content of the low literacy guide will be informed by consultation with people with lived experience of Hepatitis C, as well as health professionals. Client artists will be engaged to create the artwork for the resource.
The Hepatitis See project will also explore what resources will be useful to cohealth staff in terms of understanding and responding to Hepatitis C, including the use of the low literacy resource and referral pathways. This approach will engage staff who may not have had significant experience in dealing with hepatitis C issue and prepare them for the use of the low literacy guide upon its launch.
Service users consistently indicate that they feel stigmatised and often experience discrimination as a result of their HCV status. The need for improved community education about transmission risks to reduce the stigma is required. There is a significant body of research that indicates discrimination and stigmatization are detrimental to the health and wellbeing outcomes of people who experience it.
Recommendation 8
That all jurisdictions work together on a public education campaign co-designed with people living with hepatitis C that aims to reduce the stigma and discrimination experienced by people living with hepatitis C.
In his own words Shane gives the context within which he acquired Hepatitis C, the stigma and discrimination that he experienced and the impact that it has had on his life. While the cost of treatment can be expensive, it is clear that these costs are minimal when given the context of the social and life costs of Hepatitis C which can be huge.
“When I was 8yo, I was running away from home all the time coz I was being abused by a family friend. I was running away but I couldn’t tell my parents why. My parents took me to the police station one time when I ran away and the Superintendent told me that I would be in serious trouble if I continued to run away. My mother informed the Superintendent that we were adopted. It was her uneducated point of view that what was in my blood was bad. Every time I was in trouble, mum would refer to the fact that I was adopted and that it was in my blood.
The abuse continued from when I was 7 until I was 12 years old. Then we moved to the city and I was taken into a boys home and made a Ward of the State because my parents never came to court to show support for me. While I was in the boys home, I was vulnerable and my case manager knew that from the psychological reports and the interviews, that I had been abused and he preyed on my vulnerability. The abuse started all over again, this time from him.
At 14 years old I ran away from the Boys Home to go and live on the streets. I came into contact with heroin on a daily basis and I developed a huge appetite for it. It blocked out the pain, the emotional pain that I was experiencing all the time. I felt alone and betrayed and used and abused. I felt that the only reason I was adopted was because my adopted parents had a photograph of me on the mantel piece at work. In those days people thought that if you can’t run a family, you can’t run a business
I carried on using heroin and I was in and out of St Vincents hospital for heroin addiction. I would go in there and dry out and I knew I was in a safe place. Once I dried out, I went straight back to the street as I didn’t have government assistance and I was a minor so I continued the next few years just living on the street and working as a male child prostitute, to pay for my heroin addiction.
I found it relatively easy – I could do 3 clients a day and that was enough to pay for my heroin. I didn’t use cleanly back then because needles weren’t readily available so it became second nature to share. I spent the next 20years using heroin and in and out of jail where we shared needles more so; we called it “running the gauntlet” I was released from prison in 1982 after four years.
Then next time I was in rehab they explained to be about a new virus called Hepatitis C and they informed me after a week or so my Hep C status was positive. I got onto a methadone program in 1994-5 and I was living in the country in a small town of around 2600 people. There was a government hospital there where I used to pick up my methadone from. The staff there knew I had Hepatitis C and they expressed that in their attitude towards me: that it was my fault and they shouldn’t be wasting resources to help us.
In the town where I lived, the nurses married the farmers and I assume that one of the nurses told her husband that I had Hepatitis C. I went in one morning to pick up my methadone and I came back to work where I lived in a house. I’d been working there 7 years, sometimes for nothing, just for rent on the house, helping the farmer to stay above water.
I pulled the car up from the hospital and there was a group of men, all workers from our farm. There were 15 odd workers who started throwing stones at my car. I reversed back and the boss was behind me in his car. He got out and came round to me and informed me that he had no choice but he had to let me go because we had been sharing a water bottle from an old cow’s milk drum. There was a cup hanging off the side and you just dipped it in the water and drunk from it.
In their ignorance they figured that they could have caught Hepatitis C from me and passed it on to their own wife and family. They were extremely aggressive towards me. The boss paid me a cheque and told me to get off his property.
I asked if I could go and get my clothes and he said “do it quickly”. I went around to the front door – all my clothes were burning away to the walkway of the front door; they’d all been burnt. The workers continued to abuse me verbally while I was walking to the car, they were still throwing stones at me and abusing me.
I had to leave that town because someone had broken my confidentiality and had told someone that I had Hep C, even though they were nurses, they were still ignorant about Hep C and ways of catching it.
When I went in to organise my methadone to be transferred, I was told by the Matron that they were ceasing from now on to dispense methadone and that I would have to leave anyway. I was shattered because I was trying to get my life in order and I worked hard for this man. I thought he was my friend, but like a lot of other people in my life, it turned out to he was just using me to upgrade his farm.
All that went out the window when he found out I had Hep C. I offered to get pamphlets to show him and maybe keep me on. He had no concern to do this, he said for me just to go. He had to keep his workers and they said they’d quit if I wasn’t gone immediately.
Years went past, I was just travelling from Byron Bay, Nimbin, Griffith, Mildura, afraid that if I stayed in the one spot, people would find out so I constantly moved around.
I used to drive myself into trees, not because I was suicidal but because I just couldn’t live with the pain anymore. Then they took my license off me, the buggers!
I finally came to hear of a rehabilitation for Hep C, but in the town I lived in the Health Department said they didn’t have the facilities available. I did some research and found that there was a visiting Hep C nurse once a month or once a fortnight coming to a private practice in Mildura. I was told that it would be quicker to move to the city to get on a program and to have the support as it was told I was psychologically challenged and suffered depression and rejection. I was told that I was fragile psychologically, it would be better if I was in a more facilitating environment.
I came to Melbourne and went to a housing co-op and asked them to help me to get onto the interferon program. They redirected me to Health Works in Nicholson St. I was getting my methadone prescriptions form there so I felt safe with the staff there that no one would harass me for having Hep C.
The staff there are all educated and that about the disease so that there is no problem and I could seek treatment here and I would be looked after psychologically for any side effects that may occur.
The treatment made me depressed some days but no more than normal. After 3 months of being on the treatment, the only side effect I really have now is fatigue. I’ve become cold to talk about it, I’ve cried many nights because of having Hep C – I was told by my church that it was a punishment for living a lie and following Lucifer and they blame me and I suppose that they are right in a way that it was my fault
The support that I have received through Healthworks has been the essence of the full recovery. They have a holistic health program where they look after everything: your psychological wellbeing as well as your physical wellbeing.
The staff treat us with dignity which helps in keeping you well and self esteem feeling in yourself. Since I’ve been getting Hep C treatment at Healthworks, the holistic approach to my health has empowered me to get in contact with my birth mother.
And as with everything in my life, since I started this treatment, healing hasn’t just been for my Hep C but for my emotions too. It has brought me in contact with my birth mother; she rings me every 2 days and she expresses her love for me.
I can’t think of any time in my life that I have felt this well and I firmly believe that it is through the clinic that has accepted me and treated me with dignity and respect that has enabled me to start to love myself as well. I would not have made contact with my mother if I had not got treatment for the Hep C.
Everything started to fall into place after treatment. My life has just turned around. My mother doesn’t treat me with any malice about my Hep C. She’s looked it up on the computer and found out all about the medical side. She’s done nothing but praise me for going through the treatment and putting up with the side effects.
She kisses me when she comes to see me. She’s come to see me three times. She rings me up two days after I have my treatment each week and I’m starting to feel better and I feel a bit emotional after I have my interferon shots but she rings me with encouragement and support which makes all the difference.
One day when I finish the Interferon and I’m well I’m hoping to maybe move to Tasmania.”
Collingwood