A disease like any other

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Stakeholders say that chronic pain should be seen as, and treated like, any other condition. So why is chronic pain, and those who seek treatment for it, so stigmatised?

Media and health stakeholders are increasingly claiming that Australia is in severe danger—if not already in—an opioid crisis which, while not approaching the levels experienced in the United States, is of significant concern.

In November 2018, Monash University’s Faculty of Pharmacy and Pharmaceutical Sciences issued a press release titled “Opioid epidemic has reached Australia: study,” outlining research undertaken by Austin Health pharmacist and CMUS PhD candidate Samanta Lalic and her team.

This study found that 1.9 million Australian adults began taking prescription opioids every year between 2013 and 2017 (before low-dose codeine was upscheduled to Prescription Only). It also showed that 2.6% of these people—around 50,000—became long-term users of the medicines over a year. Ms Lalic called for a change in prescribing culture and an increase in awareness of non-opioid options.

In March 2019, NSW Deputy State Coroner Harriet Grahame made 26 recommendations arising from an inquest into the deaths of five people from multi-drug toxicity and one from heroin toxicity, and highlighted the extent of NSW’s problem with opioids.

“NSW has a significant and growing problem with opiate and opioid overdose,” she noted. “While figures are notoriously difficult to interpret, it is clear that the number of deaths is continuing to increase. 2016 recorded the highest number of drug deaths in twenty years.

“Many of these deaths were caused by a combination of drugs, including prescribed opioids, heroin and benzodiazepines. If the death rate continues to trend upwards, as it has in the United States, the annual death toll could reach many thousands over the next five years.”

And federal Health Minister Greg Hunt told attendees at a Pharmaceutical Society event in February 2019 that “we know that the opioid addiction crisis which, whilst nowhere near the challenge of the United States or elsewhere, could easily get out of hand”.

“It’s already way beyond anything that’s acceptable,” the Minister said, adding that measures such as Chronic Pain MedsCheck and real time monitoring will help to address the 1800 overdose deaths in Australia each year—1100 of which are from opioids, 700 from legally obtained opioids, he said.

The Government has instigated a number of measures to attempt to stem the amount of opioids being prescribed and taken in the community; as well as the high-profile upschedule to Prescription Only of low-dose codeine in February 2018, in June last year, it has also tackled prescription opioids.

Chief Medical Officer Brendan Murphy wrote to the top 20% of opioid prescribers, with the cooperation of the AMA and RACGP, to let them know their prescribing was being “considered” by the Department of Health.

Meanwhile, the TGA opened a public consultation in February 2018 regarding S8 opioid use and misuse in Australia. It is now reviewing issues around prescription of strong opioids, including pack sizes, indications, label warnings and CMIs, and education for both health professionals and consumers.

But while opioid deaths are growing, is Australia really headed for a US-style crisis—and if so, are measures being taken in the United States helping, or fuelling the epidemic?

Melbourne pharmacy owner Jarrod McMaugh, who is also the president of Chronic Pain Australia, told the AJP that Australia’s situation is a “long way” from that of the US.

“There are many reasons for this: Australia has a smaller population and fewer jurisdictions—there are fewer ‘moving parts’ as far as regulation is concerned, so this regulation tends to be more effective,” he said.

But there’s another, less obvious crisis taking place here and in the US, he said: “overreaction to these ‘opioid crisis’ labels”.

This overreaction—as well as stigmatising mainstream media coverage of the opioid problem—may be causing harm in its own right.

Turning away

There’s no doubt that the increase in opioid use in the United States has been disastrous. In a February 2019 announcement, Food and Drug Administration Commissioner Scott Gottlieb, in outlining steps the FDA is taking to combat the crisis, called it “one of the largest and most complex public health tragedies that our nation has ever faced”.

“Sadly, the scope of the epidemic reflects many past mistakes and many parties who missed opportunities to stem the crisis, including the FDA,” Dr Gottlieb said.

He said the FDA had changed its approach to act more quickly and to take a much more aggressive approach to regulatory action.

“At the FDA, we’ve committed to taking more rapid action in the face of new threats, like the growing prevalence of illicit fentanyl that’s contributing to overdose deaths, or the continued prevalence of prescriptions being written for durations of use that are too long for the clinical circumstances for which they’re intended,” he said.

Sam Keitaanpaa, an early career pharmacist and PSA SA/NT Branch committee member, told the AJP that the US crisis is underpinned by a shift from the use of prescription opioids, to what are essentially non-prescription opioids.

“The most important thing to unpack is what we mean by the opioid crisis in the US,” he said, pointing out that in many cases of overdose and overdose death in that country, illicit drugs such as heroin are tainted by unexpected ingredients including licit drugs such as fentanyl, though in the US fentanyl itself is often manufactured illegally.

“Australia is lucky in that we haven’t really seen those high rates of fentanyl in our heroin,” he said.

“But we are starting to see that—so we know it’s possible, and it would match international evidence which shows incorporation of fentanyl into those products as a trend.”

In many cases, people who move from licit to illicit opioids do so as a result of drug policy, Mr Keitaanpaa said.

Various US media have reported on chronic pain sufferers who have been turned away by pharmacies who have refused to fill their scripts for opioid painkillers… some of whom have subsequently lost their lives to suicide. For example, in January 2019, Must Read Alaska reported that the state’s Pharmacy Board wrote to pharmacists to direct them to follow the law: which means they must fill legitimate scripts for the medicines.

The letter was a direct response to an increase in pharmacists refusing to fill opioid scripts.

And in October 2018, Cleveland.com reported on patients who felt abandoned by their prescribers, who were now refusing to treat their chronic pain.

Australian change

Prescription of pharmaceutical opiates has been increasing in Australia since 2009, from 10 million prescriptions per year in that year, to 14 million prescriptions written in 2018, according to Penington Institute data.

Joyce McSwan, pharmacist and founder of the community-based pharmacy professional service program PainWise, said that in the past five years, attitudes around opioid prescribing have shifted significantly in Australia as a result of awareness of aberrant use and misuse of the medicines.

“We came from the cancer medication side, where we had lots of excellent guidelines about managing cancer pain, so we kind of extrapolated that and were probably taught if it’s good for that kind of pain, it’s good for chronic non-cancer pain and you can updose it.

Pain specialist Joyce McSwan

“We had no adjunct therapies, the Lyricas, the amitriptylines of the world. The adjunct therapy science has only become really strong in the past 10 years—pregabalin wasn’t listed on the PBS, not that long ago.

“Unfortunately—or fortunately—the [low-dose] codeine thing probably highlighted not just the addiction part of it, that these issues are now affecting our chronic pain patients and many are dependent,” she said.

“Then the government, in all its wisdom, decided to try and help—which is needed and important, and regulation is required—and they obviously thought a quick sweep of action would help, so they sent lots of letters to doctors to warn them.

“That’s profound, because it really was a management strategy that was very reactive. It was done reasonably swiftly—whether with consultation or not, who knows—but the usual bodies weren’t consulted. Was this the best approach?

“Pulling the rug out from under people is not a solution. It’s a quick one, but people are not stupid: they’ll just go up to Nimbin.”

Sudden cessation of opioid pain relief would enhance chronic pain, because it “increases catastrophisation,” including among people who are not misusing the medicines, Ms McSwan said. “They think, ‘I’m not believed’. The invalidation feeds into more chronic pain.”

Mr McMaugh said that what he describes as the overreaction to the “opioid crisis” label is already leading to prescribers fearing reprisals and changing prescribing habits, based on external pressures rather than the specific needs of the person in pain.

“Some of the things that people in pain are worried about are sudden cessations, or moves to use less effective or appropriate treatments due to a perceived need to avoid opioids.”

One factor both Australia and the US have in common is a “general lack of comprehension” about the dangers of opioids, he said.

“People have this opinion of opioids that is overly simplistic and can be broken down in to two lines of thought—illicit opioids are evil and dangerous and will kill you; prescribed opioids are safe and innocuous and appropriate. Neither of these things are true, yet both are widespread beliefs that can lead to harmful behaviour.

“People who have persistent or chronic pain and have been using opioid analgesics for a long period of time will often have a more realistic view of the safety of these medicines—they probably understand all too well that these medicines don’t eliminate pain, and that their dangers need to be respected alongside their benefits.”

Addressing stigma

With headlines generating fear of an opioid crisis, the patients accessing them are often subject to stigma.

In a recent update on SafeScript (Victoria’s real time monitoring system) directed to Victorian Pharmacy Guild members, state president Anthony Tassone asked members to stop using the term “doctor shopping” when referring to patients who are seeing multiple doctors seeking drugs of concern including opioids.

“Terms such as ‘doctor shopping’ risk overlooking and ignoring the potentially complex health issues being faced by these patients,” he later told the AJP.

“It also risks categorising patients as something other than individuals with their own history and needs requiring help.”

People living with chronic pain already feel stigmatised, said Mr Keitaanpaa: “both because of the stigma around the medicines they have to use, and I think there’s a perception that people in chronic pain are essentially told they need to get over it, or move on with their lives.

“It’s very debilitating as a patient to hear that. You want health professionals to care for you, and anything dismissive is very stigmatising.

“That also works on the flipside, where people who are using quite a lot of pain medicines don’t want to be known as a junkie. As soon as someone’s using lots of opioids, we think, ‘addiction’ but I’ve had a number of patients do this, and they’re not addicts. They’ve just developed a tolerance. They’re not off robbing Grandma down the street, they’re employed.”

Jarrod McMaugh cited the low-dose codeine upschedule, saying that Chronic Pain Australia members had given significant feedback that they did not want the flexibility and convenience of self-treatment taken from them, but the change proceeded anyway.

“There is a tendency for people in pain to be told what is best for them, what their experiences are, that their perceptions of pain or the effectiveness of treatment is wrong,” he said.

“I’ve heard people with significant influence say ‘of course people in pain want access to opioids, because they’re dependent on them’—a worrying sentiment coming from a person who works in pain advocacy.

“If a person working in this space can’t understand the point of view of people in pain, then what hope do we have that decision makers will listen? People do not want their prescribers to be put in a position where they are pressured to cease or reduce effective treatment based on policy.

“It is very difficult to reassure people in pain that their worries in this area aren’t going to be the outcome, since on most policies to do with pain, the experiences and wishes of people in pain are listened to last, or not at all.”

Meanwhile, chronic pain itself leads people to lose their lives to suicide, Mr McMaugh said.

“People feel powerless; it is expensive to gain access to allied health services that can impact on the experience of pain. Pain impacts on a person’s ability to participate in employment and training, yet it is not recognised by the NDIS system or other schemes that contribute to supporting people with disability or chronic conditions.”

Other options

Non-pharmacological pain management tools need to be given greater consideration, the stakeholders said.

Indeed, one of the recommendations made by Magistrate Harriet Grahame in March was “that support be provided to increase the availability and accessibility of non-pharmaceutical pain management strategies, including hydrotherapy, counselling, physiotherapy and mindfulness training. Further research should also be undertaken into the use of medicinal cannabis in chronic non-cancer pain as an overdose prevention strategy.”

“The evidence absolutely points to all the non-drug modalities,” said Ms McSwan. “Not everyone can do yoga or tai chi, but there’s good old breathing, relaxation therapy, anything that is mind and body connecting is often very beneficial, and the slower the better sometimes, too. It’s not like we’re rehabbing to get people back on the soccer field again; it’s about functionality on a whole other level.

“And the antidote for invalidation is very much health literacy for the patient. It’s not what they want to hear, but it helps them understand where things are at, and it’s about being brave enough to say, ‘all right, that doesn’t sound that great but let’s courageously break that down together’.

“People talk about hope, but before you have hope, you have to have courage. We don’t talk about that enough.”

With lack of access to pain management clinics—particularly in rural and remote areas—pharmacists could be far better utilised, said Mr Keitaanpaa.

“On the ground, it’s about engaging openly and honestly with patients—teach patients how to use their medicines and remind them that in a lot of cases it’s about balancing expectations of lifestyle,” he said.

“I’ve got people who are 65 and 70 and they’ve worked in the bush all their lives, they’ve now got really bad back pain with degenerative disc pain—you have to have these conversations about how you have to slow down.

And when patients do develop dependence on prescription painkillers, they need help, not further stigmatisation.

“The number of people accessing programs like methadone and suboxone should really be as high as possible—cost is a barrier, and it’s tightly controlled as to how it can be prescribed,” Mr Keitaanpaa said.

“They can prescribe 360mg of MS Contin a day but they can’t prescribe 8mg of suboxone? There’s massive scope for pharmacists in addiction management. The hill I die on will be that we will do OTC suboxone before my career is over!

“And anywhere we think there’s an issue with opioid dependence forming, we should encourage things like a staged supply contract, which takes you from a monthly follow-up with a doctor to a weekly or fortnightly follow-up with a pharmacist. I’ve had massive success with it.

“Basically like any medicine, opioids should be used at the lowest effective dose, and where the dose is not effective, we should look at the root causes of the disease and other methods to treat it. Pain should be treated like any other disease.”

Jarrod McMaugh agreed: “The primary advice for any health practitioner who has concerns about a person’s pain or their treatment of their pain is to actually talk to the person in question,” he said.

“Be honest about your concerns rather than trying to hide them with procedural excuses, ie ‘this new system doesn’t allow me to fill this prescription’.

“The greatest risk for harm to a person in pain comes from mistrusting the health system; if people are stigmatised or feel that they are being scrutinised with every interaction, then they will not trust you as a health provider, and will assume that your motivations—no matter how well intentioned—will result in poorer control of their pain.”

For more on chronic pain, see our CPD Activity “The Language of Pain” by Debbie Rigby

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