It’s true. Bad veins can turn people away from Hep C treatment.
The Hepalogue has touched on this issue a number of times, most notably in this earlier post. Users, whose veins have sustained permanent damage after decades of clandestine drug use, may shy from clinics they believe will negatively judge them. And, currently, even if such a person does front for a blood exam, treatment may still not progress if health workers cannot draw blood and the required analyses cannot be performed.
It is often suggested that the number of people concerned is minimal - but among experienced users (a group highly likely to harbour Hep C) the problem is not uncommon. Surgical-style options do exist but the prospect of such procedures - plus the potential difficulty in accessing them - can cause some to shy away.
Recently, I became acquainted with Marguerite, a veteran user with something of a tale to tell on this neglected subject. What better, I thought, than to interview a real person with seriously scarred-up veins to hammer home the point - to draw attention to how such wounds, beyond any medical considerations, can also be a focal point for stigma and discrimination – literal stigmata that, like Hep C, can persist for the term of one’s natural life.
We were suffering through the shrivelling last hours of a heatwave, sitting in sticky black vinyl chairs at a cheap laminate conference table. I’m not familiar with Marguerite's customary dress sense, but today, owing to the weather, she was stripped back to a tee-shirt.
On each forearm, she wore an elasticised compression wrap: the kind you may have seen in the front windows of pharmacies, on fit-looking dummies kitted out entirely in these ‘athletic support’ garments.
However, Marguerite was wearing hers for emotional rather than athletic support.
‘My bruises and bumps and whacks and what not… I think they look ugly and horrible, so I’d rather just use these,’ she said, indicating the ‘sportswear’.
She is in her early Fifties and started injecting seriously around eighteen - during the late-seventies/early-eighties, when there was a high prevalence of Hep C among Melbourne injectors.
I’m guessing you picked up the virus pretty quickly?
‘I did. I was diagnosed when it was still non-A, non-B.
(TGP: It wasn’t until the late ‘80s that Hepatitis non A, non B officially became Hep C.)
What led you to get tested?
‘I was itchy.’
Sorry?
‘I was really itchy. No rash or anything, I was just itchy. I bought pinetarsol, I bought baby lotion, anything to stop the itching. I was scratching myself stupid.
Pinetarsol... I used to bathe in that stuff. For me it was fleas.
‘So, I went to the doctor. He said: you inject drugs and you’re itchy... you’ve got hepatitis.' (TGP: Itchiness (or pruritus) is a common symptom of hepatitis. It is thought to be caused by a build-up of toxins in the bloodstream.)
‘And the doctor was right,’ continued Marguerite. ‘The tests came back positive. Then he told me I was going to die.’
Right. But how did you stop the itching?
‘I went to a naturopath and she got me to bathe in porridge.’
But… ‘I didn’t fill the bath with porridge.
Imagine how much porridge I would have needed! And how would I have gotten it down the plug hole?
‘I put it in a stocking and rubbed myself with it. After a few weeks I was fine.’
You were a regular injector at this stage?
‘Yeah.’
And alcohol?
‘Nah. Maybe when I was in high school, but nah. Adult drinking’s not my thing.
Has the Hep C led to any liver-related problems, over the years?
‘Nothing that’s landed me in hospital, or even at the doctor’s. I got septicaemia one time, but that was related to injecting – nothing to do with my liver. To be honest, after the itching incident, my Hep C was never more than just words on paper.’
Just a little more background... Are you on methadone at present?
‘Nah.’
Ever?
‘Oh, yeah.’
When was this?
For a moment or two, Marguerite shuffled numbers in her head. ‘The longest I’ve been on it consistently is maybe… eighteen months? These days, if work takes me overseas, I’ll tend to go on the program for convenience sake.'
‘What about bupe. Tried that?’
‘Yeah. When it was still actually bupe.’ Presumably, Marguerite was referring to the fact that Suboxone (currently the preeminent buprenorphine product in Australia) also contains Naloxone (Narcan©): a drug used to revive people from opiate overdoses. Taken sublingually, as prescribed, the Naloxone in Suboxone® has virtually no effect but, if one attempts to inject the medication, it reduces any buprenorphine-related high. Our government favours Suboxone® because it addresses the problem of ‘diversion,’ but some users baulk at the idea of taking a strong medication with no technical therapeutic value - Marguerite presumably among them. Subutex©, which contains buprenorphine and nothing else, used to be in general use, but has been generally superseded by Suboxone®.
‘I was on bupe when I tried rapid detox,’ she continued.
Really? You did that?
‘Three times, actually.’
Really? Because you were... going overseas?
‘No. And I had two naltrexone implants. I tried the tablets once too.’ For the record, naltrexone is an opiate antagonist: a drug which binds powerfully to opiate receptors and, in sufficient doses, will negate the effect of opiates. It may cause sudden, precipitated withdrawal and is used in rapid detox. This is a technique which became popular in the early years of this century, but which has somewhat fallen out of favour due to serious risks and the questionable practices of some doctors. Naltrexone implants slowly release the drug into the system over an extended period (generally a month) during which opiates will have little or no effect on the client. The pill form, taken each morning, will do the same.
Sounds like you were seriously trying to stop using?
‘Yep. I pulled up. I didn’t touch opiates for eleven and a half months.’
Wow.
‘Pretty good, huh?’ she said.
Very. When was the last time you got it into your head to stop?
‘Probably… 2010?’
Think you’ll ever try again?
‘Nup.’ She paused, considered for a moment. ‘Nup. Don’t think so.’
Back in the day, did you consider having treatment for your Hep C?
‘I used to have a job supporting people who were going through the old treatment – interferon, ribavirin, that stuff. No fucking way was I going to put myself through the things I saw. It was awful. They went through hell. I don’t know anyone on that treatment who was able to maintain a full-time job. Luckily, the Hep C wasn’t affecting me, so… why the fuck would I put myself through that sort of ordeal? No way!
‘But then the new stuff appeared on the horizon, the DAAs , and here we are…’
You had blood tests? Along the way?
‘Yeah. The numbers meant jack shit to me, but I’d have liver function tests every six months or so. The doctor kept saying – well they’re high. The numbers are quite high… but nothing ever came of it.’
Every six months. That’s pretty diligent.
‘I was a sex worker. I had to have tests. And since they were taking blood anyway, I’d ask them to throw in an LFT.’
And all this time you were busy fucking up your veins?
‘Oh yes. Fucking them right up. I was a groin injector for a long time, after my arms became unusable, and that was fine. In a medical setting, it tended to really help if they’d let me take my own blood.’
More clinics are allowing clients to take their own blood, but many still do not. As for ‘groin-injecting,’ this is the practice of accessing the femoral vein (the principal vein running down the thigh) high up where the leg meets the torso. It’s not exactly recommended, but here’s a guide if you happen to be going there.
Was the groin-injecting related to the sex work? It being a bad look having tracks on your arms?
‘It’s a bad look having tracks anywhere - sex work or not.’
Of course…
‘That vein’s gone now too. In the groin.’
Where did you go to after that?
‘After my groin? To fucking hell and back.’
From the expression on her face, Marguerite was in no way joking.
So, the new Hep C treatments arrived. The DAAs. No injections, no major side effects. But you couldn’t get access because you couldn’t provide a blood sample?
‘Not for want of trying. They just couldn’t get blood out of me. No one could. I got to the point where I just didn’t want anyone putting another hole in me.’
I wonder, do you ever find yourself getting embarrassed in that situation? In a clinic, say. Having such bad veins?
‘Fucking oath I do. And not just in clinics. ‘If anyone else is around when I’m having a shot, they’re like: “Oh, do you want me to have a go?” Fuck off! No! I don’t want you to have a go! “Oh, I’ll be able to do it! I’ll be able to do it!” And if they weren’t my arms, I’d be saying, “alright then, smart arse, do it!” And, of course, they can’t. Know what I mean?’
I do.
‘You just get so frustrated! I’m to the point where I don’t inject in front of anyone anymore. Just because I’m sick of people putting in their two bobs.’
But, as I understand it, you did eventually manage to access the new treatments – despite your vein problems.
Ýep. I did.’
How?
‘Someone I know went onto treatment. Someone with the same genotype as me. ‘And you know how most people clear it within the first four weeks? But you’re supposed to keep taking the medication for up to twelve weeks, just to make sure?’
Yeah.
‘Well, when this particular person had their four-week test, it turned out they hadn’t quite cleared it. So, the doctor – to be safe not sorry - ordered them a second round of treatment. And my friend gave me some of that.’
‘How much exactly?’
‘Two months’ worth.’
Let’s hope it was enough.
‘Yeah, let’s hope.’
Whilst saying this, Marguerite seemed unusually stoic. Even a little brave, to me, looking through the eyes of someone who has actively battled Hep C for decades. I can scarcely imagine how it would feel - having taken the treatment for Hep C, yet not being able to supply the fluids necessary to learn if it worked. The frustration. The anxiety. But Marguerite is very different to me and, plainly, she never let her Hep C get on top of her the way I did.
Isn't it tormenting you? Not knowing?
‘Actually, I’ve got an appointment next week,’ she said with a sudden smile.
‘At the safe injecting room.’
The MSIR (Medically Supervised Injecting Room) is located in North Richmond. It is Victoria’s first safe injecting space and opened its doors to clients in mid-2018.
‘Supposedly, there’s a guy there, an anaesthetist. He comes in once a week and people say he’s the bee's knees. The duck's nuts,’ she added.
Marigold indicated a point in the region of her left armpit.
‘I believe there’s one here. Just here… ‘
With increased concentration, she probed the area under discussion.
‘I just… can’t quite find it….’ She paused in her efforts.
‘You know they’ve got that Venoscope thing there?’
There are a number of hand-held blood-taking aids currently on the market. One is the Venoscope, which uses ultraviolet light to highlight veins. Many swear by it, but my own (admittedly amateurish) efforts left me feeling, at best, ambivalent. Beneath the pale skin of my arms, the device revealed a disturbing panorama of what looked like interlocking, gently pulsing spider nests.
‘I’ve got it into my head,’ continued Marguerite, demonstrating as she spoke, ‘that if someone can hold the Venoscope on my arm, just so… while I’m having a shot… then I’ll see exactly what’s going on under the skin. You know? While I’m poking it in…?
I nodded.
‘You know how… sometimes, you get it in, but you have to… tap tap tap? To get the vein?’
Yeah. Or pull it back if you’ve gone too far?
‘That’s right.’
If he’s successful, this gun blood-taker, you’ll use the blood to find out if your treatment worked?’
‘Yeah. After I’ve had a shot, of course.’
By the way, I’m assuming this person who gave you the DAAs - they wound up clearing their Hep C?
Marigold eyed me stonily. ‘Of course.’
*
Before I let you know about Marguerite's experience at the MSIR, I want to briefly touch on something else. I’d heard that some years back Marigold had been the (anonymous) subject of a feature in The Age.
So, what’s the story with your media experience?
‘Well, they rang, wanting to talk to someone who used drugs, specifically ice. Obviously, someone had dobbed me in for it.’
Why ice?
‘There was a hue and cry at the time. 2007. The usual hysterics…’
Upon reading the article, I saw what she meant. Interestingly, twelve years ago, the authorities were inclined to put a damper on the subject, stressing that most of what we bought as ice was just ordinary old speed (dexamphetamine) and that any real ice sold was almost always of a very low quality.
Interesting, isn’t it, the changes a decade can make? So, obviously you use ice as well as gear?
‘Yeah.’
You smoke it?
‘Yeah, but I was injecting it back then. I had to stop because of my veins. I save them for heroin now.
‘Don’t get me wrong,’ she said. ‘Agreeing to help with this article wasn’t an easy decision. I know that users get fucking taken advantage of all the time in the media. I know of people being offered fifty bucks by reporters wanting to photograph them while they hit up. Next thing - their face is on the front page of the Herald Sun.
‘The worst thing you can do is use your real name. That’s rule number one. I was involved in this harm reduction video where peers talked about their lives as injecting users. I used my real name for that – now, it’s the first thing that comes up when you google me.
‘Personally, I think I should be out and proud about my drug use, but… the reality is that sometimes I don’t want it out there. But it is! Permanently. Thanks to Google.’
So, this article…?
‘They wanted to come to my house,’ explained Marigold, ‘and observe me in my natural habitat. There was a writer and a photographer. They wanted to see me before and after I had my drugs. I explained that taking ice was the first thing I did of a day, even before getting out of bed. It didn’t faze them. They came round early. Before work. I answered the door in my pyjamas, set them up in the loungeroom with some coffee, then went back to bed and shot up.
‘When I came back out, they reminded me again to tell them when I’d had my shot. I told them I’d had it already. They were surprised. I think they were expecting a Jekyll and Hyde situation.
What happened then?
‘They followed me around for a day. Followed me to a garage sale. I remember them sitting in the back yard while I hung out my laundry.’
What were they like, these people from the Age?
‘Perfectly charming. A little disappointed when I told them I didn’t do crime…
So they had an agenda?
‘Yeah, they did. But they were honest and upfront about it.
‘The only reason I agreed in the first place was because they said they wanted to let the public know that there were people out there who used ice who weren’t crazy lunatic stereotypes… That’s why I did it. And, to be fair, the actual story did portray functioning and not functioning ice users… it was the editorial that ripped me to shreds…’
She was right. The editorial wasn’t exactly flattering to Marguerite. The writer of the main article also tracked the activities of a more disorganised ice user – the kind one typically sees in the tabloid media. Sadly, while Marguerite's photos were anonymised (she had a friend go through them to check for anything that might give away her identity) the other user allowed their face and emaciated body to be shown in all their lurid glory. But the editorial focused on Marguerite. The writer did everything they could to break apart the story of her being an ice-user who functioned as an ordinary citizen. They pulled out their blades and underlined each of her misadventures that might have been blamed on drugs, claiming, it seemed that there could be no such thing as a high functioning ice-user. Well, so much for the press.
*
I caught up with Marigold a few weeks after the first interview.
So, you’ve done it? You’ve been to the safe injecting room, seen the anaesthetist?
‘I have.’
id you tell him about your plan? About finding that hidden vein?
‘Yeah, I did…’
How did he react? ‘
Well, he sort of nodded his head and seemed to be thinking “silly girl, I’ll show her what's what.”’
I hope he took you seriously?
‘Oh, yeah. Awesome guy. No judgement. We had a big chat and he understood that I’d exhausted just about every vein in my body. I let him know I’d been a groin-injector, but that I’d stopped after it caused a deep vein thrombosis (blood clot). He suggested that we try the other side of the groin, the side I hadn’t used.
How many tries did it take?
‘One. He just pointed at the spot. I jabbed it in and that was that.’
So, you did it yourself?
Of course.
Why 'of course'? Weren’t you there to get tested?
‘This was the safe injecting room. I was there to have a whack. They won’t do that for you.’
But... the Hep C?
‘Well, I have been carrying around a pathology slip for over a year and, since we’d found a vein, I asked if we could take blood for analysis. He said “sure” and so we did.’
And you did that yourself too?
‘I did.’
Got the results yet?
‘Yes.’
And?
‘All clear.’
Congratulations. Do you feel different? Do you feel better?
‘You know… not really.’ Who knows what it is? Some people notice an immediate impact when their Hep C departs, others not so much. One thing that can be said with absolute certainty: your liver is better off without the virus greedily preying on its hepatocytes year after year, decade after decade…
‘It’s just never been a big thing for me,' said Marguerite.
'I was in a meeting and happened to mention that I’d cleared the virus. And everyone started cheering. It was weird. I mentioned it to my boss at work and he was the same. He said it was a big deal. Asked me why I was carrying on like it wasn’t. I just told him it didn’t feel like a big deal to me.
‘But I must say I feel a bit naked without it. I’ve lived with it a long time. Maybe it became part of who I was… in my head.’
That’s not unusual. As strange as it sounds, some people can feel a kind of separation anxiety….
What were the results of your liver function test?
‘My ALT was 9.’
That’s amazing.
‘Is it? I wouldn’t know.’
So, how are you doing with your veins now? Still using them daily?
‘Yeah.’
How’s that going?
‘I usually have a couple of attempts, and if that doesn’t work… I go intramuscular.’
So... the struggle continues?
‘Look, I’m pretty sure I’ll be using drugs till the day I die, so… I guess it does.’
-The Golden Phaeton
Comments