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We Treat Recovering Opioid Users Like Children, Unworthy Of Getting Well

Sophie* is standing in line at her local pharmacy.

In front of her, an older man is growing increasingly impatient. He shifts from foot to foot; sighs, yawns. The staff are all busy with other customers, reading out dosing information from the back of children’s Panadol boxes and filling repeats for Celebrex.

Sophie, too, can feel the first whispers of withdrawal: the tingly skin, the faint ache deep in her bones. But unlike her fellow methadone recipient, she’s resigned to this routine. She knows there’s no point kicking up a stink. Like they do every other morning, the staff will make sure that all the ‘regular’ customers are served before turning their attention to the methadone queue.

When Gary*, the head pharmacist, finally ambles over to dose the sugary synthetic opioid into plastic cups, the older man straightens up. He downs his medicine in a single gulp.

Sophie is six months pregnant. She had wanted to quit taking methadone when she conceived, but her GP had explained to her that quitting, or even reducing her dose too quickly, could result in miscarriage.

READ MORE: There's A Way To Wean Addicts Off Ice. Why Is It Being Suppressed?

Perhaps Gary doesn’t know this; perhaps he simply doesn’t care. But Sophie is fumbly from early withdrawal, and in one horrific moment, she nudges the flimsy cup and watches the syrupy liquid spill out across the benchtop. Eyes wide, she stares at Gary. “Shit. Oh my God. I’m so sorry, could I please…”

“I’m sorry. You know I’m only permitted to give you a single dose per day.”

Sophie’s stomach turns. “But, I’m pregnant!”

“I’m sorry. You know the rules. It’s your responsibility to look after the medicine.”

Sophie sees the long day stretching out ahead of her, sees herself consumed by increasing pain; vomiting. What if she miscarries? In a sickening jolt, she knows what she has to do, and she leans over to suck the dirty liquid from the benchtop before disgust and shame can stop her. She dry heaves; forces the solution back down.

She doesn’t look up once as she hurries from the pharmacy. She can’t stand to see the horror and pity on people’s faces. As she paces toward home, she forces herself not to break into sobs.

For all its benefits, the methadone program comes with its own price; one that takes the form of relentless stigma. (Image: Getty)
RULES, RULES, RULES

Since it was first pioneered in the 1970s, Opioid Substitution Treatment (OST) has helped thousands of Australians reduce or cease their problematic drug use and get their lives back on track. The program is beautiful in its simplicity: provide people a reliable and low-cost supply of their drug of dependency, and they are no longer forced to spend their lives doing whatever it takes to procure expensive and unsafe illicit drugs.

But for all its benefits, the methadone program comes with its own price; one that takes the form of relentless stigma.

OST programs are unlike any other daily medication regimen. A person on methadone does not simply bring their script in to the local chemist and pick up a month’s supply of medicine. They are subject to an immense list of rules and requirements. Here are just a few:

  • The patient must apply to be inducted into a program at a particular pharmacy, which means paperwork, photos and interviews. The pharmacist has right of refusal.
  • The patient must attend the pharmacy every single day to be dosed. They are therefore unable to travel. After several months of daily dosing, and provided they have presented to the pharmacy every single day, they may be permitted one or two “take away” doses per week, but the pharmacist or doctor can revoke these at any time.
  • If the patient misses doses, is aggressive, or breaks any other rule, the doctor or pharmacist has the right to rescind takeaways or remove them immediately from the program.
  • The patient is required to line up in a segregated section of the pharmacy, often behind a dividing screen, which is specifically for OST clients.

Of course, this list is far from exhaustive. Many pharmacies choose to institute even stricter policies. And here is the underpinning principle: OST clients are guilty until proven innocent.

But for all its benefits, the methadone program comes with its own price; one that takes the form of relentless stigma. (Image: Getty)

Methadone patients are not afforded the trust enjoyed by every other customer. Indeed, the rules to which they are bound take untrustworthiness for granted. Based on what? A long outdated view that those who become addicted to illicit drugs are inherently immoral.

And so, before the patient has even set foot in their pharmacy of choice, they have already entered themselves into an absurd and humiliating game whereby they must prove themselves worthy of the most basic trust.

This is stigma. And stigma hurts.

Dr Angela Argent (PhD), who works with an expert research team in the field of addiction as the National Program Manager at SMART Recovery Australia, says: “None of us can do well when we’re treated worse than others. Stigma, discrimination, and social devaluation get in the way of mental health.”

And so, the methadone patient has no choice but to accept a devil’s bargain:  To obtain the thing required to aid in their recovery, they must sign up to a set of policies which undermine it.

NAVIGATING THE METHADONE MAINTENANCE MAZE

What’s it like to be on methadone? What's it like to be one of the people who line up at the back of the pharmacy while the ‘regular’ customers pay for their ibuprofen?

For Lucy*, it’s almost missing her shift at work. The 45 year old turned up at her chemist at 8.05 one morning and was met with a queue of 10 people.  “They can’t get the safe open,” whispered the woman in front of her.

Lucy craned her neck to see the junior pharmacist fidgeting helplessly with the methadone safe.

“He just kept trying different codes, but it wasn’t looking good,” she tells me.

Minutes turned into half an hour. The chemist teamed with people who had somewhere else to be, and the staff told Lucy and her cohort nothing.

“Some of the people had kids and they were starting to cry and misbehave.  There were prams blocking the aisles. We were all trying to work out what they’d do if they couldn’t get it open.”

“That seems absurd!” I interject. “Surely they would have to find some other way to get you your meds. Did anyone kick up a stink?”

Lucy considers this. “Well we didn’t have to, cus they managed to pry it open somehow.”

This was at 8.45am, almost a full hour after opening.  Lucy was late for work, others for school and childcare. The staff didn’t apologise.

READ MORE: My Friendship With A Heroin User Showed Me Just How Judgemental I Was

It only struck me later that my question was pretty insensitive. If the people in that pharmacy had felt there was any chance they could get away with “kicking up a stink,” they probably would have.

Lucy’s is only one of many concerning stories. Another comes from Greg*, 50, who turned up at his pharmacy one morning to find they’d lost his script.

“They gave me my dose for that morning,” he recalls, “but I wasn’t allowed my takeaways, so I had to ring my doctor and ask for an emergency appointment.  He gave me a copy of the script and I brought it back to the chemist. By the time I finished all the running around it was 6 o'clock -- I just scraped in before closing.”

What strikes me, listening to these stories, is the resignation with which they are recounted. Again and again, I find myself stifling interjections. “But that’s ludicrous!” I want to blurt out. “It’s their responsibility to find the bloody script!”

But the more stories I hear, the better my understanding becomes of why people like Greg and Lucy bite their tongues.

What would happen to Greg if he were to argue with the pharmacist’s staff, or demand they recover the lost script themselves? Maybe nothing, or maybe he would be reprimanded and reminded that the chemist has the right to remove him from the program if he proves himself to be a disruptive client.

OST patients can’t simply waltz out of the pharmacy and find another place to shop. They are not customers, in the traditional sense. The relationship between a pharmacist and a methadone recipient is closer to that of school teacher and pupil; the chemist holds all the power.

The relationship between a pharmacist and a methadone recipient is closer to that of school teacher and pupil; the chemist holds all the power. (Image: Getty)

I’m sure that most pharmacists take this power imbalance very seriously. But that doesn’t change the fact that, for Greg and Lucy, the threat of being thrown into painful withdrawal is forever hanging over their heads. In a tit-for-tat exchange, they simply have no cards to play.

Frankie*, who at only 22 has already been in and out of opioid addiction for eight years, tells me what it feels like to be reminded always that you aren’t entitled to the same rights as other customers:

“We are constantly reminded that we don’t deserve the same level of service as the regular shoppers,” says Frankie. “I’ve been to chemists where I wasn’t allowed to ‘loiter’ in the shopping aisles… you have to walk straight to the methadone queue and stay there because they think you’re going to steal.”

Frankie says she’s expected to use the same old medicine bottles for months; she simply brings them back each time to be refilled. “They don’t even clean them,” she tells me, “so they end up looking really disgusting.”

But she reckons the worst thing is the “attitude” of the staff. “Even the ones who are nice, they talk to you like you’re stupid, like you’re a child. They don’t trust us to make our own decisions about our healthcare.”

THE INSIDIOUSNESS OF STIGMA

How would you react if you were given your medication in a used, dirty container? What would you do if your chemist blithely announced that they had lost your script, so you had better go arrange a new one? How would it impact your mental health to live under the constant threat of having your medicine taken away?

What would it do to your sense of self to be spoken to like a child, or to be reminded every day that you aren’t considered worthy of the same freedoms as the people right beside you?

And how would it make you feel, if the people tasked with overseeing this treatment, were supposed to be the good guys?

……......................................................................................................................................................................

The doctors, chemists and staff members who administer OST programs are not evil or mean spirited; they are not personally at fault. What they are is complicit, in a program which is at its heart based on a false and long-superseded assumption: that someone who was addicted to heroin must be untrustworthy, and must lack the level of responsibility required to manage their own healthcare.

Here’s Ange: “The stereotype of untrustworthiness follows [OST clients] around each and every day, regardless of the reality of tenacity, hard work and change.”

This is stigma. That it is institutionalised doesn’t make it any more acceptable: it merely shows how deeply stigma against users of illicit drugs is woven into the fabric of our culture.

HOW DAILY STIGMA IMPACTS METHADONE CLIENTS' MENTAL HEALTH

I ask Greg if he believes the program’s rules are too strict, and am met with weary resignation. “Maybe, but nothing is going to change. I’m certainly not going to be the one to say something -- I’m on my last warning as it is and I don’t know if I’d be able to find another chemist.” Greg has already been removed from one pharmacy in his town for reasons he denies and has asked me not to report, but as a result he has a “black mark” on his application paperwork. He’s concerned that another ouster would render him unable to access his medicine at all.

Why might people like Greg and Frankie be so resigned to their treatment?

Methadone recipients are treated like naughty school children who must be kept in line: nursed along, rewarded, scolded, punished.

They must ‘earn’ what most of us would deem basic respect. The culture of the program is built on the assumption that people who have been drug-dependent are incapable of managing their own welfare.

So, when  it comes to speaking up about mistreatment, the methadone recipient is constrained by their powerlessness. Frankie describes a constant need to “lay low”. To accept, to tolerate, to never make a fuss.

What would it do to your sense of self to be spoken to like a child, or to be reminded every day that you aren’t considered worthy of the same freedoms as the people right beside you? (Image: Getty)

Says Ange: “When people see that they are treated differently, they begin to anticipate stigma and are less likely to be able to value their own recovery and continue with the work of change.”

To me, it seems that the effects of constant stigma are similar to those of being in an abusive relationship. When you are subjected relentlessly to stigmatising attitudes about the kind of person you are, those attitudes begin to weave their way into the fabric of your identity. Without robust moral support, without the best possible defence system made of love and affirmation and self belief, you can no longer recognise where stigma ends and the truth begins. You internalise this constant assault.

It wears you down until eventually, you believe that the treatment you get must be exactly what you deserve.

Unfortunately, it’s probably this utter resignation, the clients’ difficulty in advocating for themselves, that enables the culture or complicity at many pharmacies. In the absence of advocacy from professionals, or some sort of oversight body, the only thing policing pharmacists’ practices are the pharmacists themselves. It’s easy to see how, in this environment, one could get lazy: where is the incentive for vigilance against stigma?

WHAT IS IT LIKE TO TRY TO RECOVER IN THIS ENVIRONMENT?

At a time when clients are trying to build the self esteem essential to beginning a healthy life, they are confronted daily with the fact that they will never shake the neon sign on their foreheads that blares: “I’m not as good as everyone else.”

The effects of stigma -- shame, poor self esteem, powerlessness and fear of reprimand -- are antithetical to the mental tools, self esteem and self possession necessary for a healthy recovery.

Says Ange: “Distress, frustration and anxiety caused by stigma threaten emotional well-being and people’s capacity to cope. Where drugs once formed part of a coping strategy, a huge serve of stigma only makes the comfort of drugs seem more appealing.”

Current OST provision practices are harming people’s chances of recovery.

It’s time we reviewed the inordinately tight prescribing rules and the plainly discriminatory policies which those simply trying to recover must endure. (Image: Getty)
WHAT DO WE DO ABOUT IT?

Here’s the hard truth: the only possible rationale for these blanket policies which punish people before they’ve ever made a mistake, are:

  • Clients are inherently untrustworthy, based on assumptions about the kind of life led by a person dependent on opioids
  • Clients deserve to be punished for their dependency

We must look past the negative stereotypes that contaminate our thinking and see that OST patients deserve the same rights and treatment as every other consumer.

This is not to imply that every OST client is a saint, but to point out what should be obvious: allow clients the same benefit of the doubt extended to everyone else. If they screw up, deal with it at the time.

It’s time we reviewed the inordinately tight prescribing rules and the plainly discriminatory policies which those simply trying to recover must endure. OST treatment should be a bastion of harm reduction: a haven for those who make the brave choice to try to lead healthier lives. People should feel empowered and hopeful as they embark on their methadone program, not wary that, in seeking help, they will face more overt stigma than ever before.

Is it any wonder that stigma is a major barrier to seeking help?

Those of us who call ourselves harm reduction advocates should turn our attention to the injustice that’s been right under our noses. We need better education of the public, we need policies that are in line with modern thinking on addiction. And we need prescribers and pharmacists to be willing to listen and adapt. It’s a huge challenge, but one worth fighting for.

Frankie tells me she’s getting tired of having to front up at the pharmacy most days.

“I just wish it was easier. It shouldn’t be this exhausting, just trying to do the right thing.”

The people I interviewed for this article were kind enough to share their feelings on a controversial topic.  I’ve changed their names to protect their identities.

There are two medications available for opioid substitution treatment in Australia, methadone and suboxone.  I’ve referred to methadone, the more popular of the two, in this article, but the stigma faced by suboxone recipients is similarly pervasive.