The Elimination Train - Fearless Words from Legendary Harm Reduction Advocate Annie Madden (Part 1)
A conversation about (among other things) a new Hep C study that looks at things from the patient perspective.
If you are a user, be thankful that people like Annie Madden are out there, living and breathing your welfare. If legendary figures could be said to exist in the harm reduction community, she would be one of them. She has been advocating, loudly and remorselessly, on behalf of Australian drug users all her working life.
She emerged in Queensland during the dark days of Bjelke-Petersen, working for a user group called QuIVAA (Queensland Intravenous AIDS Association) which established a number of successful peer-led programs in Brisbane, including, against great odds, an NSP. Since then, and until recently, she has continued to work for drug user organisations, moving first to NUAA in NSW where she was peer CEO and then to AIVL (the Canberra-based peak body for Australian state/territory drug user organisations ) which she ran for sixteen years.
I interviewed her recently for The Hepalogue, and when listening to her speak on the challenges faced by drug users it is difficult not to be carried along on a wave of sadness, empathy, outrage and determination. She's one of those individuals who, while not physically large (let's be honest – she's pint-sized) generate an great presence through the power of their convictions.
According to Annie, users are a misunderstood, vilified and often ignored minority desperately in need of a voice. And her passion on this subject has only grown more intense over the years.
Recently, she moved to Melbourne with her partner. While still directing some of her energy towards the harm reduction effort here, she is shifting her vast experience at the coalface into the halls of academia.
“I've always kept a critical eye on the academic space. But now I'm in that space myself, I feel a responsibility to address the things I've criticised, particularly the respect given by researchers to their subjects.'
Her research, of course, concern Hep C. She is involved in a study by the CSRH (Centre for Social Research in Health) at UNSW which is investigating if the effort to eliminate Hep C in Australia may be helped by conducting a 'PROMs' on current injecting drug users engaged in the new hep C treatments. (That's including those who have completed it and those who are just thinking about it.)
PROMS, you say? It stands for Patient Reported Outcome Measures. It is a tool which assesses the quality of medical care from the perspective of the patient. In the past, its use has been confined to conditions such as varicose veins and groin hernias, but Annie and her colleagues suspect that it may assist in increasing treatment uptake and quality among those suffering from Hep C. After all, who knows better about a patient’s experience and treatment outcomes than the patient themselves.
Annie hopes that 'down the line, if we get there, it will primarily be used as a self-assessment tool for people who are on, or at either end of treatment. A way to check in on themselves. To help with decision making. To figure out what they might need, the outcomes they might expect from the treatment.
'And let's be clear, the vast majority of hep C treatment consumers are injecting drug users. They don't have access to these kind of tools: tools which are routinely available to other health consumers; means by which they can be a real part of health care decisions that concern them, influencing their journey, rather than just being along for the ride.
'It's a way to put power in the hands of consumers, I guess.
'Additionally, we hope it might help health professionals better understand the priorities of the consumer, and concentrate on those, rather than on their priorities as health professional.'
- The word 'Outcome' is part of the PROMs acronym. It gave me the impression that there was a focus on how things ultimately pan out. From what you're saying, it seems like you're focusing on every stage of the experience...
'Actually, one of the unique things were doing is looking at the term PREMs as well as PROMs - exchanging 'Outcome' for 'Experience'. Outcome and experience are different things, but they're very much related and often linked. Your experience can dictate or at least colour your outcome. So we're expanding this existing tool to see if it works for people on or thinking about getting on hep C treatment.'
- Having answered your PROMs questionnaire, I noticed that there seemed to be an particular interest in instances of stigma and discrimination. You seem to really want to know how people feel under the gaze of those providing the treatment...
'That's certainly an aspect of this. Having a peer researcher (me) involved in in the project means we have a unique opportunity to look at issues which some respondents may not feel comfortable raising with a mainstream researcher. Hopefully, through a process of trust and empathy, I can give people the space to talk about things that can be painful or difficult to broach. As you well know, some have been treated appallingly by the health system – repeatedly, over long periods of time, and the thought of willingly putting themselves back into that system may be more than they can reasonably contemplate.'
- Particularly, perhaps, if they have been previously been treated with interferon, or have heard the horror stories about it?
'Absolutely. I cannot recall one interferon patient I've spoken to over the whole time who has ever said – oh, it was fine. Some had worse side-effects than others, but all had side-effects. People are saying - You expect me to believe that suddenly the whole picture is exactly the opposite? There are no side effects? Suddenly it's all a walk in the park?'
- I've talked to many who've said exactly that.
'Users are smart people. With the right information they can make good decisions, but I do worry that for some people their access to information is quite limited.'
- And they can be unwilling to trust, based on their prior experiences?
'For some people, depending on their experience, it can be outright fear. Fear of something going wrong in a system they can't trust. For example, I know someone who had a very bad abscess in the spine from injecting-related issues...'
- Whoah! You're not telling me someone was shooting up in the spine...?
'No! But over time the infection found its home there, and because it remained undiscovered it really took hold. 'Excruciating’ is how they described it. They wound up with a long stay in hospital and were treated very badly. Because they had the junkie label, pain-relief was an issue and they really suffered for the lack of it. (TGP: Users continue to be routinely denied pain relief in medical environments due to a perception that they 'drug-seeking'.) Then, on discharge, the hospital not only failed to prescribe them painkillers, but also methadone take-away doses for the immediate post-discharge period, leaving them not only in terrible pain but in opiate withdrawal, catching public transport, in a brace, on their way to get their pharmacotherapy.
'This is the kind of treatment that seems reserved for drug users.'
- There's a word for that...? It's not exactly prejudice...
'Human rights violation? Of magnificent proportions?'
- Maybe discrimination is the word I was looking for?
'Now, this person is becoming increasingly ill from hep C and related issues and is really reluctant, despite the all the good news treatment stories, to venture back to the same health system that so badly mistreated them.
'This is the classic thing with hep C. It's the bad news stories that really stick, and travel like crazy...
- That's probably true of everything.
'And the good news doesn't travel as fast. But I do think we have a really important opportunity at the moment, to spread the good news stories.
- Well the politicians and bureaucrats have been excited enough to produce a policy document expressing their will to annihilate stigma by the year 2030.
'All I can say is good luck to them on that. It's a commendable goal, don't get me wrong. But what’s missing are the ways and means behind those big picture policy statements from government. How are they going to achieve it? What does it even mean to them?'
- To my mind, if they're serious about it, they have to look at drug law reform.
'You very quickly get to that point. I mean, how else are they going to do it?'
- Perhaps they didn't realise that when they wrote it?
'Yeah, and isn't that interesting.'
- Perhaps they were just over-excited. Perhaps they felt like they could achieve anything on the back of the hep C miracle cure.
'These moments in time, when things align, are really important in political terms. But... I dare not think that something might change on the drug law front because it never bloody does.
'It makes me think of what happened with gay men and homosexuality in relation to HIV. I gave a talk recently reflecting back on that, and wondering if hep C and the new treatments might deliver an 'HIV moment' for the drug user community - because the legalisation of homosexual practices was fundamental in people getting real access to HIV treatment in Australia. It was a total game changer, you know?'
- Would you say that an acceptance of homosexuality as a natural part of the human condition (not a personal choice) was central to it?
'Absolutely.'
- But then... when dealing with drug use and Hep C, you inevitably run into a perception that people deliberately choose to adopt the lifestyle...
'You very quickly get face to face with drug use and drug users being depicted as a social evil. And that's very similar, as you say, to the age old script for homosexuality - that it's some kind of evil eating into our society.
'We're well into the 21st century now, and there are few discriminatory moral positions that have survived – but drugs remain a thing that does not seem able to escape the negative labeling.
‘And a lot of it comes from the very top, if you want to see it that way; from UN conventions that find their expression in local and domestic laws and policies. Particularly the 1961 Single Convention on Narcotic Drugs. In its opening paragraphs it states that ‘drug addiction’ is a form of social evil. Coming from the realms of international law and UN conventions this is extraordinary language. Regardless of how you view substance use, the terms ‘drug addiction’ and ‘drug dependency’ are linked to individuals – a person is ‘addicted to’ or ‘dependent on’ a drug; not a society, a law, a policy or a government. The ‘evil’ is therefore being associated with the person who is dependent. The UN is saying, in essence, that drugs and the people who use them are a form of social evil.
‘This is the only case I'm aware of where the UN gets away with dehumanising a whole class of person. As for drugs; they’re inanimate. How they can be a ‘social evil’ is anyone’s guess...'
- I'm actually shocked they used that language.
'They don’t even talk about genocide or terrorism - or any of those things they like to refer to as ‘evil’ – in terms like those. It seems to be something reserved for the drugs area, and I think it’s one of our biggest challenges, how we address this kind of thinking.'
- People often talk about how racism and poor-shaming underlie social attitudes to drug use...
'It's a complex picture - a tangle of evaluations and myths from which people can pick and choose depending on their prejudices; all sorts of various threads that give credence to people’s discriminatory opinions, that layer them up. So you're that much worse off if you're black and lesbian and a drug user. Know what I mean? You can get double, triple marginalisations…
'But you don't have to peel back very far to see the underlying reason. It's the illicit nature of the drugs and the consequent criminalisation of people. A black-market is created, the drugs become expensive, people steal, get arrested... You know the story.
'I don't know… I worry, in my darker moments, that nothing will ever change because it's too big. It's all too big.'
- Could it be innate to how we are as a civilisation?
'I can't bring myself to believe that.
'The hard truth about intravenous drug use is that it's a real minority practice. The vast majority of people will never inject drugs in their lifetimes. So, for those who find themselves on that road, it's always going to be hard. We've just got to hope for change...
- Perhaps we're getting a little off the Hep C track. You mentioned to me that someone, a health professional, suggested that maybe we shouldn’t worry about stigma, given that the new treatments require so much less direct involvement with health providers. Potentially, you can be written a script and then - see you later.
'That just shows how reluctant people are to really deal with the issue. The person in question was doing important hep C research prior to the release of the new treatments. At the time it was actually thought that stigma and discrimination would just go away because consumers would have so little contact with the health system.
'I worry that the glittering successes of the new treatments may have led to some in the sector developing a messiah complex. We should never forget that users and consumers have also done a huge amount of work to get us to this point. People from AIVL. People from HRVic and other user groups. We sat on the PBAC (Pharmaceutical Benefits Advisory Committee) and on all the forums which led up to the decision, making the case on behalf of consumers. We made submission after submission over the many years it took us to get to this place.
'We even presented at a federal parliamentary inquiry, where we put ourselves on the line as individuals, on Hansard, declaring that we had hep C and were drug users. I mean, those things are in the record forever...
'But what was really satisfying is that the PBAC - which makes decisions around drug listings - publicly acknowledged the role of drug users and people living with hep C in getting the decision through. To their credit, they valued our voice and said that some of the material that we presented, particularly the real life stories, had a real impact. Research is one thing, they said, the stats, the clinicians' reports etc., but at the end of the day people's real life experiences carried the day.'
- Thus Australia became the only country in the world with universal hep C treatment access - and billions of dollars were committed. It was an extraordinary decision. I imagine the process leading to it was extraordinary too?
'My god... there were so many false starts. You could tell how hard people were fighting to get it over the line. At least two PBAC meetings came and went without a decision being made. But as fabulous as the outcome was, the hard truth is that people died in the time it took to make it.'
- And are dying still because it took so long to happen.
'Exactly. And we should never forget that. It probably sounds a bit ungrateful, yet… however great a decision it seemed, in my view it was an obvious one.'
- Who actually signed off? The final signature?
'Sussan Ley. The Federal Health Minister at the time.'
- Wouldn't she have had to go to Turnbull...?
'Yes. Since Julia Gillard's government, if the PBAC makes a positive recommendation, then the Health Minister can act but only with approval from Federal Cabinet.'
- Do all drug listings have to be approved by Cabinet?
'Every decision to list every drug goes to Cabinet. The PBS is sitting on a pot of cash which is under a huge amount of scrutiny, particularly with our ageing population...
'I guess I raise this because the recent resignation of Sussan Ley is potentially an interesting turning point.'
- How?
'Well, the modelling suggests that the hep C elimination strategy will take a minimum of ten years to complete. That's the best case scenario, ideal world, everything going exactly to plan…
- I'll eat my hat if that comes to pass.
'We'll be eating hats together. So let's say fifteen, twenty years maybe for elimination, once again with a lot of things falling into place – so for how long are these expensive drugs going to be listed? Currently, it's five years, and we're already a year into that. Does the effort have a future, or will there be a failure of political will?'
- My thinking is that, in certain circles, Australia gathers a lot of kudos for their decision. It's good to be a world first; governments tend to be proud of such things. It might help prevent them going soft on the idea... But what of Sussan Ley? Did you ever meet her?
'A couple of times. She's an impressive woman, no doubt about it. Taller than you might think. Quite statuesque… though that's only my view and I am short. She knew the issues. She really did her homework. She read what was before her, knew what was important and why. I think it was a very conscious decision for her and she may see it as something of a legacy issue.
'But now that she's resigned, there is a question mark over that legacy. Will the next Health Minister carry the torch forward? Who knows?'
- Yet it's such a bold flagship policy. Governments rarely achieve something that is so plainly an absolute good.
'Of course. It's a winner. But I do wonder how things will play out as prevalence begins to decrease. As time moves forward, there may be other diseases that affect larger groups of people. What will be its priority then? I mean, one of the factors we had on our side with hep C was the massive number of people infected, which was increasing all the time…
'And of course we're still in that space. We still have way too many new infections. And we don't measure those adequately.'
- It's quite frustrating how long the figures take to come out.
'And that they're based largely on estimates. The figure of 10,000 new cases each year has error margins stretching between 6,000 and 13,000. They're developing techniques to get better figures as we speak, but this current method is a victim of the federal system. We have sentinel surveillance sites all over the country, but each state and territory tend to do things slightly differently. The methods of collection and the criteria vary, and this can create problems.
'But, as I said, they're looking to iron these things out.'
- I assumed it was a notifiable disease like, say... I don't know... syphilis? And that the info would go straight to a federal database?
'It goes to a state database, in the first instance, or should. And this is another problem - you're depending on the reports of doctors and pathology labs and they may not always be reliable.
'Unfortunately, very robust federal reporting systems are also very expensive to set up and keep going. In Australia at least we can be fairly sure that our PWID rate - to some extent - can stand in as a surrogate for hep C incidence. Having said that, our PWID numbers are quite rubbery as well.
'But, as I mentioned, there is work going on as we speak to shore up both of those statistics.
Continued in ... Part Two
The Golden Phaeton