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Standing Committee on Health - 20/03/2015 - Hepatitis C in Australia

DIDLICK, Mr John, Executive Officer, Hepatitis ACT

CHAIR: I again declare open this public hearing of the Standing Committee on Health and call the next witness, which is Hepatitis ACT. Do you, as a witness appearing before the committee, have any objection to being recording by media during participation in this hearing?

Mr Didlick : No.

CHAIR: Thank you. If you have not already done so, can I ask that you please read the document on the witness table referring to parliamentary privilege. Thank you for taking the time to come and give evidence today. Would you like to make a short opening statement to the committee?

Mr Didlick : Yes, I would, thank you. Firstly, thank you to the committee for the opportunity to contribute to this important inquiry. I would like to begin by acknowledging the traditional owners, the elders and ancestors of the lands in this region. Today I represent the members of Hepatitis ACT and our communities of interest, which include an estimated 4,000 people living with hep C in the nation's capital.

We are not that different from most other urban centres. We have people living with hep C and people at risk, and community and clinical programs, with drug users, drug dealers and drug laws. We have a prison that incarcerates drug users and drug dealers. We have a hep C epidemic with an alarming trajectory, unmet need and not enough resources committed. We have competing interests and vested interests. We have people dying from a disease that we know how to treat, and we have people contracting infections that we know how to prevent.

As regular visitors, you would know many great things about the national capital, but there are some things here which we get less excited about. Our Canberra Hospital is a 30-minute drive for even the most remote Canberran, but our hep C treatment rates are significantly lower than the national average. Testing for our most vulnerable is inadequate, as evidenced by the gulf between incident notifications and incident estimates. Despite a new, modern, human-rights-aspiring prison, our detainees inject drugs, have high rates of hepatitis C and help to sustain the epidemic through in-prison transmissions. Finally, our ACT data is so poor that we do not even know how many people we treat in the ACT for hep C and hep B. We simply do not acknowledge, invest in, or respond to hepatitis C with the necessary urgency or priority.

As to blood-borne viruses in prison, I note the committee's interest. The roundtables laid bare our inadequate response to blood-borne viruses in prison. If I can paraphrase Mr Jones's analysis from the roundtables: the most cost-effective and efficient tool in preventing hep C is the NSP. Our detainees are at the greatest risk. We spend on millions on testing, treatment and community NSP, plus an astronomical amount on our prison systems, yet we fail to put in place the most effective prevention strategy in the highest-risk setting. Embarrassingly, our national strategy fails to mention the issue, despite Lord-knows-how-many people pointing out that glaring omission and providing the supporting evidence.

The NSPs that exist in Australian prisons now—and there are NSPs in Australians prisons now—are unregulated, infectious and implemented by people who know how to make a little go a long way. As a Canberran, I note with some pride that the ACT government has a policy to implement a program of regulated access to sterile equipment in our prison. This is something that Hepatitis ACT supports and that many people in the Canberra community support, including many detainees. With your permission I would like to return to that issue when I conclude this statement.

With regard to the national strategies, the frustrations experienced by experts in having important content written out of those strategies are also felt in community when our advice is ignored. Contributing to the national strategy's consultation for me was a deflating experience. There are many examples where incorporating good advice from community would have improved those strategies.

In relation to stigma and discrimination, I acknowledge the compelling evidence given by people with lived experience in this inquiry. I would like to make an additional observation about stigma and discrimination that is created through the 'invisibilisation' of hepatitis C. I have described this in my written submission to the inquiry. We primarily think about stigma as the demonising or ignorant ways in which hepatitis C and illicit drug use are portrayed. However, there is a flip side too: the ways in which hepatitis C is not portrayed or acknowledged. It was said about HIV-AIDS, 'If you can remove us from the public discourse you can render us powerless'. That reminds us that stigma and invisibilisation act to disempower and invalidate. Inequity and discrimination in health care, policy settings, research and surveillance reporting create a whole new level of injustice. They act to diminish the priority placed on hepatitis C, and they discount the importance of the lives of those who live with it.

I would like to thank you for the opportunity to make this opening statement, and would like to conclude by reiterating to the committee, and also to those currently considering whether Australia will pay for new life-saving medicines, that people living with hepatitis C are not expendable. We must not consider the mounting toll to be acceptable deaths. Thanks.

CHAIR: Did you just say you wanted to go back to something after you had finished your opening statement?

Mr Didlick : If that would please the committee.

CHAIR: Okay.

Mr Didlick : We have a particular interest in blood-borne virus rates in prison. We have that because of the work that we do, and also because of our interest in blood-borne virus prevention and transmission in Australia. Hepatitis ACT delivers a community education program. We do workforce development with Corrections staff. We deliver formal blood-borne virus awareness and prevention education in the prison's education unit—they get a certificate for attending, they learn some things, it enables them to access work in the prison and it may also be helpful for consideration of parole. We do loosely-structured health promotion work with special populations in the prison and we do opportunistic blood-borne virus awareness and prevention education in cell blocks. With the support of Corrections and Corrections officers, we access detainees in their space, we engage with them on their terms—with whoever wants to engage and however they want to engage—and we provide information and education. We answer questions, we hear their concerns, we provide further information, we advocate for specific issues and that kind of stuff.

We have been doing this for three years or so, and have developed rapport and trusting relationships with many detainees. Many detainees disclose to us. They ask questions and they tell us what they think about a whole range of things. We have built good working relationships with many of the prison staff, too. Front line officers facilitate our access, they sometimes share their thoughts, they ask us questions and they always help us out. Both groups—detainees more so than staff—tell us what they think about drugs in the prison, about blood-borne virus risks and about the proposed NSP.

I am aware that I am fudging answers to questions with prepared statements; I would like to be responsive if I can, but stop me if you need to stop me.

CHAIR: I am going to ask you a question, to kick off. Your submission states that there is a gulf between estimated incident cases and notified incident cases, commenting that testing for hepatitis C is inadequate. To address this problem, you recommend rapid testing targeting vulnerable communities. Could you provide more details on the rapid testing, and how it would affect testing rates? How might the vulnerable communities be targeted for rapid testing?

Mr Didlick : My point about the difference between incident notifications and incident estimates identifies that testing amongst people who are most at risk is inadequate. If people, specifically populations of people who inject drugs, were tested more often, then the gap between incident notifications and estimates would be much less. In the ACT, I think it is 15 incident notifications last year and an estimated 90 incident cases, and I think that disparity is reflected nationally as well. I note there has been some evidence put to the inquiry about rapid testing. I would leave clinical advice to people who have a clinical background, but I have brought two papers that relate to dried blood spot testing. Dried blood spot testing is in place in other parts of the world. It is not able to be used, I believe, because it requires TGA permission to do so. It is not able to be used in the diagnosis of hepatitis C, but it is an option particularly for populations of current injectors, some of whom have poor vein access, who may not want to be gouged by medical professionals to provide large quantities of blood. If it is okay, I can provide those two papers to the committee. Did that answer your question?

CHAIR: Yes. Does anyone else have a question?

Mr STEPHEN JONES : You would have gleaned from your generous quotation of me from an earlier hearing that I acknowledge the prima facie benefits of needle and syringe programs across the population in general. I also have to take note of the legitimate workplace health and safety concerns of custodial officers in a prison setting. What evidence can you give us that would help us to consider that equally important issue?

Mr Didlick : I likewise acknowledge genuinely held concerns among, it is probably fair to say, most prison staff about a needle and syringe program. In my capacity as a hepatitis educator and advocate in the prison, I have had conversations with many individuals about this issue. I do not initiate any of those, particularly with corrections officers, but sometimes corrections officers want to talk about it, and I respond pretty carefully because I know that it is sensitive and I know that it is not my role to convince people of one thing or the other. That is probably between government and the union.

I can tell you this: most officers in the Alexander Maconochie Centre that I have spoken to about a NSP do not support it. Most officers do not; some do. Some officers, for example, have disclosed that they think that a prison NSP is much needed. Most have concerns about the model that is being proposed to them. I make the point because it is not accurate, in my observations, to say that the workforce is 100 per cent opposed. I know other people have a different view on that, and that is their job and that is fine. That is just my evidence from my observations.

The context for considering a prison NSP, I think, is a particularly important one. I did not wake up one morning and decide that I support a prison-based needle and syringe program. I had to get there through a rational decision-making process, through looking at evidence and listening to experts and whatnot, and I have arrived at the position that I support a prison-based needle and syringe program. I do so because my interest is in the prevention of blood-borne viruses and the health and wellbeing of Australian prisons, the Alexander Maconochie Centre more specifically, and our community.

In arriving there, I recognise that it is not a simple issue. But, for me, the arguments against a prison NSP fall apart when I think 'how does this compare with what we have got now?' For example, an argument might be 'introducing needles into the prison makes it unsafe as a workplace for me, prisoners should not have needles.' I agree. Show me the program where all needles and all illicit drug use is removed from our prison and I will sign up, no problem, because my interest is not in facilitating people to inject, it is about facilitating people to avoid blood-borne viruses as a consequence.

Mr STEPHEN JONES: Can I interrupt you there. I understand the point you make, the counterfactual for introducing an NSP in a prison is not a syringe-free prison environment. We know that, because syringes exist in prisons today. However, the evidence that I have heard in this committee, and my own reasoning process, leads me to conclude that at the moment a syringe is a valuable commodity. Somebody is more likely, given that it is so hard to get your hands on a fit, want to treat it as—I am scrambling for a word, but it is not something that you are going to use as a weapon, for example, if using it as a weapon means that you are not going to use it for its intended purpose, so it would be only be in an extreme circumstance. If we change the supply issue, the value of that syringe inside a prison environment changes. That is why I am really interested in any evidence that you are able to give to us about a model for NSPs which you think can work, which deals with that commodity issue that I have just outlined but also deals with the legitimate health and safety concerns of people who work in a prison environment.

Mr Didlick : If a prison-based needle and syringe program for example required somebody to surrender a syringe in order to access a sterile syringe, then the net effect is zero, and the net effect on the value, or the worth, of that syringe to that individual does not change. What changes is its sterility. What changes is in fact a choice that a prisoner can make about 'do I go through this process in order to avoid the risk of contracting a blood-borne virus?' I can see this working in my mind most effectively through a one-for-one scheme. That does not change the numbers of needles in the prison.

Mr STEPHEN JONES: Where does the first one come from?

Mr Didlick : There are plenty there—well, there are some there; I cannot quantify how many are there and I cannot speak for other prisons in Australia, just the AMC. There are needles there now. A new one, a sterile syringe, in the AMC will cost you $150. I have been told that by any number of different sources, so I am prepared to accept that is the going rate. How that happens, I do not know. But if somebody wants a sterile syringe, they will pay $150. They will probably need to be patient, and then they will get one.

Mr STEPHEN JONES: If you want to provide any further evidence on that—this is a critical point—the deliberations of the committee do not focus just upon NSPs in prisons, they are much broader than that, but at least for this committee member my general support for NSPs in a prison environment has to be balanced against the concerns for people who work there. If there is anything you can put to me, or other committee members, that addresses that concern, I would be very interested in seeing it.

Mr Didlick : I would just encourage you to consider arguments against that counterpoint that you identified, the reality of the situation now. How would what we have got now be better than something that is proposed?

If somebody is proposing a model, it is not helpful to say 'consider that against the pipe dream of a drug-free prison'.

Mr STEPHEN JONES: The counterfactual is not a syringe-free environment because there are already syringes there; we acknowledge that.

Mr Didlick : I would also like to provide an United Nations document. I am aware there are some views about the impossibility of implementing a needle and syringe program anywhere that works and that is safe. I would suggest that the United Nations probably would not waste their time producing this. I would like to provide it to the committee. It is from the United Nations Office of Drugs on Crime—A handbook for starting and managing needle and syringe programmes in prisons and other closed setting.

CHAIR: That might be helpful. Thank you.

Mr WATTS: Was I right in hearing you earlier when you said that there are NSPs in prisons now? Could you elaborate a little bit more on what you mean by that?

Mr Didlick : They circulate a very limited range of equipment, they are run by lunatics and they are harm production programs but they exist. So there are arrangements that prisons use right now to access needles to inject drugs in Australian prisons. Those are NSPs; they are not regulated NSPs, but they exist right now and they probably highlight the point that Mr Jones has acknowledged twice now.

Mr WATTS: Okay. Thank you.

Mr WYATT: Mr Didlick, I want to cite something you have written in your submission. You said:

Experience has taught us that a suite of strategies is required including disease awareness at the community level, prevention education, testing and diagnosis, antiviral treatment, regulation of exposure prone procedures (both clinical and body art) and blood products, and primary prevention through the Needle and Syringe Program.

According to the National Centre in HIV Epidemiology and Clinical Research4 the Australian Government’s investment of $243 million in community needle and syringe programs had by 2009 prevented an estimated 96,667 cases of hepatitis C and 32,050 cases of HIV.

And then you go on to indicate further savings. What I want to do is come back to two things: one is the Fourth National Strategy. If that is your belief then does the fourth national strategy enhance or diminish what your proposition is within your submission?

Mr Didlick : I would like to answer that question by saying that I thought it was a disappointing outcome. I note that people have said to the inquiry more than once that the third national strategy was the superior policy document. I would not argue with that.

Mr WYATT: Are there particular elements that you would like to see, if you had your way, that you would incorporate back into the fourth national strategy, other than the prison component?

Mr Didlick : I think it is fair to say that community made a raft of recommendations through the consultation process. To a large degree, those recommendations were not heard or adopted. For example, we have aspirational targets for treatment of Hepatitis C and hepatitis B. They are quite low. The document espouses equity. I personally cannot see how you can view the suite of national blood-borne virus strategies as equitable when one population group we are making non-aspirational committed targets of 90 per cent treatment. For other groups, we are aspiring to increase treatment by 50 per cent from a base of about one per cent. I cannot see that they are equitable. I understand that it is not a simple issue and that there are lots of things that people get to consider in this including finance department, but that is not an equitable situation. This comes to our advocacy message time and time again that these are Australians, they are human beings, they have the same rights, the same dreams in life, they have families, they are like everybody else but they just have this disease. It is unclear to me why we should accept and expect poorer outcomes.

Mr WYATT: What was the process for the development of the fourth national strategy?

Mr Didlick : From my perspective? The process was a short period of consultation which, from memory, involved the Christmas period, I think—or was it Easter? It is just a blur; I apologise for that. There were considerable time pressures to contribute in a meaningful way. My organisation only has five FTE. There are five of us, most are part time. When we make a decision that we are going to consult with members, consult with other experts in the ACT and prepare a meaningful evidence based response, we are choosing not to do other things. So it comes at a cost. When we put that much capacity and effort into a national consultation process, we would like to see that it was worth it. From my perspective, I am not sure that it was for those national strategies.

Mr WYATT: Who conducted it—was it the Department of Health?

Mr Didlick : Yes.

Mr WYATT: Their timeline was very short and you think it was over a Christmas period?

Mr Didlick : I wish I could be certain about that. My sense of it was—I am reminded that it started prior to Christmas.

Mr WYATT: And ran probably until the end of January?

Mr Didlick : Yes, something like that.

Mr WYATT: It seems a strange period to consult with key stakeholders on a very important issue.

Mr Didlick : It depends what outcome you have in mind.

Mr WYATT: Yes, it would worry me if we had a national strategy that does not reflect the reality of need that has to be addressed. If we take the figures that the National Centre of HIV Epidemiology and Clinical Research has come forward with, it means there is a component of thinking that is not reflected appropriately within the strategy—because with hep C you cross-infect. Therefore leaving prisons out then leaves family members of people who live in prison with hep C at risk.

Mr Didlick : And other prisoners.

Mr WYATT: And other prisoners.

Mr Didlick : And prison workers—like my staff.

Mr WYATT: People forget about the blood crossover. We have been hearing evidence about needles within prisons. If we take the notion of the needle clinic that was established in NSW, in Kings Cross, where people went and did a needle exchange—but you had a slight variation on it so that within prison you had a needle clinic where you would not leave with a syringe. You would use the syringe there and then leave it there to be accounted for. Do you believe that would work? Would it reduce the occupational health and safety issue as well?

Mr Didlick : I would like to say two things in response. Firstly, the Public Health Association of Australia compiled a report on potential models for needle and syringe programs. It is referred to locally as the Moore report—Michael Moore. That report did consider that option, that exact model. I would prefer not to try and summarise that report here. I will just advise you that it exists. My second point is: when considering a model we need to thing about a range of stakeholders, one group of which are the intended users of a program. I would not presume to speak on behalf of prisoners and what they think of different models. I am not sure there has been a process in which they have been asked. I know ex-prisoners have contributed some thoughts in the policy debate over time, but I am not sure anybody has asked the intended recipients of a program what they think.

Some comments have been made about that model to me in cell blocks by people. I am not saying that is representative of prisoners' views. I have never heard a prisoner say to me that that is their preferred model or that is the model they think would be adopted by prisoners. My own suspicion is that the merits of that model need to be considered for prisoner populations against the merits of the model they have now. If it requires them to disclose and they do not want to disclose, they will not disclose. If it requires them to put at risk a syringe that works that they have access to now in prison, then you are asking them to give up something valuable and effective that meets their needs now. Sure, it might be dangerous, but that is what they have now for the currency of something which is unknown.

My point about disclosure in this goes across broader issues than just access to one model or another. I have found in prisons, if prisoners do not trust you, they will not disclose. Plenty of prisoners who do not know me from Adam will talk to me at a very superficial level; they will not say anything. Other people, who we have gotten to know, who have learned to trust us, will disclose all sorts of things. I make that point particularly about a well-used line in opposition to needle and syringe programs in particular—that prisoners do not want one. I have heard that again and again: 'Prisoners don't even want it. Why are we doing it?' I can tell you that is not the case, but if the prisoners do not trust the person who is asking that question I am not surprised they get that answer.

Mrs SUDMALIS: All arguments aside regarding needle exchange, we were given to understand that that is not the only source of transmission, that the other one is tattooing. It seems that, whilst we might be addressing part of the problem with needle exchange, we are not addressing the whole problem. How do you see that fitting together?

Mr Didlick : It is a good question. There is no doubt that unsterile body art is a route of transmission for hepatitis C and other blood borne viruses, whether that is in the community or whether that is in the prison. We know across the population of people living with hepatitis C in Australia that between 80 and 90 per cent contracted that virus through injecting drug use. So I think that is your base, to be frank. I think that people who would suggest to you that tattooing is a greater transmission risk than injecting in prison might have a vested interest. I doubt very much whether that could be quantified. I am certainly not aware of that.

CHAIR: If there are no further questions, Mr Didlick, thank you for coming along today and giving your evidence.

Mr Didlick : Is it possible to make one final comment?

CHAIR: Yes, please feel free to do so.

Mr Didlick : I would like to make a comment about prison NSP and, in particular, the concerns Mr Jones raised about the very genuinely held concerns of the workforce. I spoke with an officer in late 2014 in the Alexander Maconochie Centre. It was completely unplanned. An opportunity arose, I introduced myself and he said to me, 'There's no point asking you what you think about an NSP, then,' and I said, 'Well, you could, and I would probably talk about it with you if you wanted, but you don't have to,' and he said he would like to. We had an opportunity to talk and he said to me that his greatest fear was being stabbed with a needle. In his prison work, that was the greatest fear that he had. He had seen violence and whatnot, but the thing that he feared the most was being stabbed with a needle and, as he described, taking home a disease to his family and living in fear for months and months, not knowing whether he had contracted a life-threatening condition.

I asked him was he talking about the sort of incident that tragically took corrections officer Geoffrey Pearce, who contracted HIV in 1990. He confirmed that it did, that was exactly what he was talking about. I asked him whether he would like me to respond to the issues that he raised and, you know, if I talked about those things would he hear me and he said that he would, he was very genuine. I should note he is an experienced corrections officer, he is very intelligent, he is a nice guy. We do not do barbecues on Sundays together or whatever, but he is a good guy.

I asked him whether he had heard of post-exposure prophylaxis for HIV and he had not. And I said: 'PEP—so PEP. Most people know it as PEP. Do you know about PEP?' He said, no. I said, 'Okay, do you know about effectiveness of current HIV medicines against HIV, and the fact that they are so effective for people who are on treatment that their virus is undetectable and the chance of transmission from somebody who is treated for HIV is incredibly low?' He did not. I asked him whether he knew about new direct-acting antivirals for hepatitis C and how effective they were, and he did not. And I asked him whether he was vaccinated for hepatitis B—hep B, hep C, HIV—and he said, 'That's it; that is the concern, that is that disease that I do not know if I am taking home to my family'.

I talked that stuff through: how PEP can be accessed, how it works, how it prevents people who have been exposed to the HIV virus from contracting a life-threatening condition—that is, HIV medicines work to suppress the virus in people so that they do not transmit it, that direct acting antivirals for hepatitis C clear an overwhelming majority of people in a very short period of time with very few side effects. I carefully explained those issues. It was a fantastic exchange of information; it was very genuine, I felt very grateful for the opportunity, when I walked away. But he said to me: 'You know what? I still don't support a NSP in the prison'. I said: 'That's great, that's fine. It's not my job to convince you otherwise.' He said: 'But I would feel a lot better about it, knowing what I have just learnt, if one was to come in. I still don't support it, but I'd feel better about it.' That was good for me, as an educator, to have done that, but I walked away thinking how is it that an experienced, intelligent officer in a workforce that we have asked to consider the merits of a NSP does not know these things? You know, there are answers for all those fears, those genuinely held fears, so the fact that he did not already have those surprised me. And I think that is an opportunity, an education opportunity.

CHAIR: Thank you for that. I think you are telling us it could be an opportunity for an education program, so we appreciate your extra comments there. Again, thank you for coming in today. If you have been asked to provide additional information, could you please forward it to the secretariat by Thursday, 2 April. If the committee has any further questions, they will be sent to you in writing through the secretariat. Also, if you feel there is other information that would help our inquiry, please feel free to forward it to us. Once again we thank you for coming along today.

Mr Didlick : Thank you.

CHAIR: Can I ask a member to move that the three documents presented by Hepatitis ACT be incorporated into the committee's records as an exhibit?

Mrs SUDMALIS: So moved.

CHAIR: Thank you.