The Hepalogue

The Elimination Train – Fearless Words from Legendary Harm Reduction Advocate Annie Madden (Part 2)

by The Golden Phaeton on 24/04/2017

Continuation of a conversation about a new Hep C study that looks at things from the patient perspective – and some frank opinions on Hep C treatment in general.

I’d like to bring this back to your PROMs work. I notice you’re interviewing current users not former. How come?

‘There was a feeling that the people who haven’t used for long enough to see themselves as connected to the drug using community – or part of that milieu, if you like – are already coming forward and getting treatment, as they are less likely to be involved in that criminalised, poverty-driven environment we touched on earlier. Often they are already in the health system and have access to services and will, one way or another, get treated, if they haven’t been already.

‘Hep C is a disease that primarily affects IDUs and I don’t think we focus on this enough. It would be unheard of, for example, to suggest that HIV treatment responses should not predominantly and overwhelmingly be focused on MSM (Men who have Sex with Men) – because the epidemiology tell us that that’s where the epicentre of the epidemic is in Australia. No one would question that – but, for some reason, when it comes to hep C, we seem to want to concentrate on those who no longer inject, rather than those who do so currently.’

 

Annie Madden at war with the machine

 

It does seem like the mainstream Hepatitis organisations want to typify people with hep C as ex-users, or people who used a couple of times at some crazy time in their youth, or else those who contracted it from transfusions or tattoos…

‘It’s just stigma and discrimination, isn’t it? Pure and simple.’

I did speak with someone recently who was leery about coming forward for treatment because they were in a high level corporate job and didn’t want to be smeared with the drug thing – even though their using days were long over.

‘I don’t think the way we’re approaching this negates the needs of people like that. I would say, once again, that if we deal with the stigma and discrimination associated with PWID then those people will also be able to come forward without fear.

‘It always comes back to this point. There are incredible, extreme levels of stigma and discrimination against people who use drugs. We have to deal with this central fucking issue.’

Was it you who pushed the need to focus on current users in the PROMs study?

‘No. We carefully thought through what would be best. We decided that this was the voice we most wanted to hear: in terms of coming forward for treatment, experience of treatment, and what was wanted from treatment. It no way do we negate, or undermine the significance of those other voices. Their journeys are just as important – for them, their families, their communities. Never would we say anything otherwise. But we felt we needed to hear a voice which is very marginalised, doesn’t get heard enough and is very important to the elimination strategy.

‘I’ll say one more really crucial thing about this. We really should not get caught up with issues around people who do not use anymore. If we are going to achieve the goal of elimination we have to be treating current injectors. There’s no way around it. They are the ones with the potential to both get reinfected and to transmit. If we only treat the people who have ceased injecting, we are not going to eliminate hep C.’

And this points to the vital role to be played by peer-led models, and by user groups like Harm Reduction Victoria, wouldn’t you agree?

‘Of course. They play a critical role helping those at the forefront of this epidemic be heard. Not those others… who only injected once or twice and have never injected again. Whoever they are… (laughs)

One tends to see them step up at seminars and conferences…

‘It’s a stigma thing. They’re a safe commodity because they’ve distanced themselves from the drugs.’

I suspect, as a general rule, that if you’ve done enough injecting to get Hep C then you’ve probably done it more than once or twice. But I must admit that at certain times I’ve painted my own circumstances somewhat more cleanly than they actually are…

‘And you know what? I don’t blame people at all for that – if the alternative is stigma, discrimination and, quite frankly, hatred.’

Sometimes it doesn’t feel like one has a choice.

‘Absolutely. And when you have children, you’re under double, triple, quadruple the pressure. More power to people to do and say what they need to keep themselves and their families safe. It’s the fucking system that’s to blame.’

Do you think people might cease to worry about sharing needles because the hep C cure is so easily available?

‘That’s something we are yet to confront, actually. That’s why, when we ask questions around reinfection, we don’t limit it to – how might you change your practices? We also ask – what does reinfection mean to you in an environment of accessible, affordable treatment?

‘But, in truth, this is a big issue that’s not being talked about anywhere near enough.

‘We’re so caught up in the whole hep C moment – and so we should be, I guess. Along with drug law and the stigma/discrimination problem, it remains the biggest issue facing the PWID community. But we should never turn our back on HIV either. We do that at our peril. A low infection rate is not a zero infection rate. Sometimes it feels to me like HIV has gone on the back burner a little during this whole Hep C thing. We have to remain eternally vigilant.’

In responding to the PROMs questions, I found myself talking about the old interferon treatments which, because of their woeful side-effects, necessitated a great deal of contact between health provider and patient. It occurred to me that this contact may have inadvertently provided a space in which the patient might informally discuss issues around the effects treatment was having on their life. But now, with the new treatments, with the life-changes far more likely to be significant, consumers are generally left to their own devices. Have other respondents noticed anything like this?

‘It has come up. In fact most people have mentioned it one way or another. I’ve picked up some sense of isolation, of loneliness…

‘One person said it quite well: as lovely as everyone has been – no stigma, or anything like that – I still feel like a bit of a number. Another one treated and out of the way. They couldn’t escape the feeling that getting them over the line was all that mattered.

‘From a disease elimination point of view I understand that attitude. But I worry about what it means in the wider sense of people’s health and wellbeing, their journey, the whole issue of their experience, what they want, what they are looking for – it seems secondary to the goal of the system.’

I wonder if that could be addressed by peers getting together and talking it through?

‘That’s the answer, isn’t it?

‘But I think the biggest barrier to this is an attitude we’ve touched on already: the treatment is fast, he treatment is simple, there are no side-effects and it’s nearly always a good new story. You don’t need to have support because you’re in and out and done.

‘Well that might make sense from a clinical, epidemiological perspective, but from the personal perspective perhaps not so much. It may be a big thing. It may be the biggest thing they’ve done in their fucking entire lives.’

It’s been large for me, I must admit.

‘And empowering potentially, huh?’

Absolutely. Overwhelmingly positive. But complicated and confusing sometimes.

‘It’s never that simple, is it? People can be complicated. You have to work your way through things, be strong – because there’s an awful lot going on inside. I suspect there are people out there who might really benefit from talking about their cure, or lack of.

‘As for me, I got my treatment soon after the approval in March last year, but I was genotype 3a (TGP: Traditionally one of the harder genotypes to treat.) and didn’t have the initial response that was expected. So I stayed on the treatment for longer. And I was only able to do that because my liver was considered sufficiently damaged.’

What? Really?

‘In my situation, at least, the normally funded treatment course could only be extended if a certain amount of liver disease was present.’

That sounds like the situation in Britain and Canada where you have to be seriously ill before you qualify for treatment. I thought everyone was to be treated here in Australia, no matter what.

‘If I hadn’t been sick enough, I would have had to pay for extended access to the treatment. But thankfully, my last test showed that I had cleared the virus. I’m due for another, a final one, but I keep putting it off… People are urging me to have it. I assure them I’ll get round to it, that I’ve been really busy, but that’s not the real reason. I know myself really well and I know that there’s something in me that just… doesn’t quite believe it.

It’s a big shift. You’re going to have to think of yourself differently. Perhaps you’re wondering if you’ll be able to advocate as efficiently without having the disease yourself…

‘It’s really stressful. I’m a procrastinator; I don’t deal with things in my life well as I should… I think it depends on how much you’ve identified yourself as a person with hep C. But I wonder about those people for who everything is smooth sailing. You never know what’s going to come up down the track, hey? When you do finally get around to dealing with it.’

I’m hearing stories of people avoiding blood tests because it can be such an ordeal for those with damaged veins. Some may be missing out on treatment because of it.

‘That’s coming up quite regularly in the interviews, and not surprisingly. People who’ve deferred it… or shelved it. I’ve had a number of participants for whom that’s been a real barrier to treatment.

 

*

 

On that note we’ll leave it, with many thanks to Annie, and with the message that HRVic is actually doing some work to help people with damaged veins get better service.

I asked Annie if there was anything she was learning from the PROMs study which we hadn’t discussed.

‘I suppose the thing that stands out is that there needs to be more and better quality information for people at every stage of treatment. There are all sorts of quite detailed issues, things that are important to the patient, not the service or the clinician or the Health Ministry. For instance, you’re told your liver heals, but when does it heal, how well does it heal? Can I normalise my diet? Can I drink?

‘HRVic has a massive role to play and should be funded, in my view, to make information available ­that’s really tailored to people who inject drugs, about reinfection and transmission, and about these internal journeys we’ve been talking about…

‘People sometimes feel a little like numbers, that they’re helping the elimination effort, rather than being important in themselves. We’ve got to stop them falling under the wheels of the elimination train.’

 

The Golden Phaeton

 

 

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