Margo Kelly is a journalist based in Toronto.
Behind the opioid epidemic lies a crisis of pain, but it lives largely in the shadows. Understandably, media have focused on the fatal overdoses of more than 9,000 Canadians in the past three years, the reckless over-prescription of opioids, and the devastation of family and friends who’ve lost a loved one. It’s a more urgent and dramatic narrative than the quiet suffering of millions living with chronic pain.
But pain advocates in North America are raising the alarm. They say the number of suicides by people with debilitating chronic pain is growing. There are calls for more publicly funded treatments, such as physiotherapy and cognitive behaviour therapy, and better access to pain-killing medication for those truly in need.
Suddenly, pain has become political, a matter of fundamental human rights. Some governments are listening. The B.C. government is drafting a chronic-pain strategy, while the federal Health Minister might soon announce a national task force on pain. But will more publicly funded services follow?
“It’s outrageous,” says Halifax pain specialist Mary Lynch, pointing to waiting lists at most multidisciplinary pain clinics that stretch from one to three years. “People just don’t get it – that pain is a disease in its own right. There are vast areas of the country that have no access to services.
"The situation is grim.”
Chronic pain affects one in every five Canadians, or six million of us. Its many causes include degenerative diseases such as arthritis, car accidents, neuropathic pain disorders and malfunction of the central nervous system. Chronic pain costs the Canadian economy an estimated $60-billion a year in health care and lost wages and taxes. That’s more than cardiovascular disease, cancer and diabetes combined, according to Manon Choinière of the University of Montreal, who has been studying chronic pain for 30 years.
“It’s not a sexy topic,“ Dr. Choinière says. “People don’t usually die from chronic pain, although the risk of suicide is higher” – at least twice as high for people with chronic pain than the general population. Yet the amount spent on pain treatments, research and education is a small fraction of what is allocated to other diseases.
So why is pain the poor cousin of afflictions? My own experience may reveal an important part of the answer. I haven’t been able to sit without pain for seven years as a result of a car accident. It’s a daily smorgasbord of aching, burning and electrical zaps. I spend large chunks of my day lying down, unable to bend my neck or back for any length of time. Watching TV is difficult. Books go on a stand that swings over my head with hinged rubber balls to hold the pages in place. But before long the nerves in the back of my head, jaw and face start to burn and I must lie on my side.
It’s immensely distressing, but after seven years, I’ve learned to cope. I smile and try not to complain. I venture out for a couple of hours then head home in pain. Yet despite all this, I’ve encountered almost as much suspicion as sympathy because I look like I’m just fine.
Make no mistake – chronic pain is an invisible problem with huge consequences. It can rob you of your mobility, work, identity and mental health. I’ve received some of the best pain care in Canada and have corporate health benefits. I’m more worried about others than myself – the millions of Canadians in pain with limited means and no benefits. And people who are misunderstood and dismissed by society, and sadly, sometimes their own family and friends.
Unfortunately, the opioid epidemic has added another layer of shame. “It feels like a hundred nail guns shooting spikes all over my head,” says Kate, a former screenwriter in Vancouver who asked me not to use her last name. In 2000, her neurologist put her on hydromorphone after various treatments for severe migraines failed and she was feeling suicidal. It worked. But two years ago, her GP cut the dose by a third.
“Now I’m bedridden and in a massive amount of pain because these guys know nothing about pain. They treat you like a drug seeker, a criminal, a liar. I’m a person with a horrible, horrible condition.”
She’s not alone. “There has been a huge chill on the issue of opioids and tremendous misunderstanding,” complains Maria Hudspith, the executive director of Pain BC, a coalition of pain doctors, researchers and patients. “We have seen people aggressively weaned, we’ve seen people being cut off their medications completely. And we have heard from people who are turning to the illicit market to access drugs in search of relief just out of sheer desperation. There have been documented cases of people who have overdosed and people who’ve committed suicide.”
In 2016, the B.C. College of Physicians and Surgeons brought in a strict opioid-prescribing standard. After complaints from patients and pain doctors, the college moved last year to relax the regulation and told doctors they couldn’t discriminate against pain patients. But Ms. Hudspith says the damage was done.
“Physicians ran for the hills when this first standard came out very punitively worded and the college’s approach – people are being written up – well, that kind of thing travels like grassfire among physicians. So even though the college has changed the wording of the policy, we don’t actually see the practice changing.”
It’s happening all across the country. Halifax’s Dr. Lynch calls it opioidphobia. “Now we have a growing epidemic related to the collateral damage where patients are not getting access to medication and physicians are refusing to prescribe.” There are already 50,000 people in Nova Scotia without family doctors, Dr. Lynch adds, so it’s “double jeopardy for pain patients. They’re being asked if they’re on opioids or have chronic pain and if so, they’re being refused care.”
There are often no easy answers in the unforgiving world of chronic pain. Treating it is complex and difficult. Trying to decide who should be allowed narcotic relief from pain and who shouldn’t is a political minefield. Thirty years ago, doctors were shamed for not prescribing opioids for pain, then, as opioid overdoses and deaths mushroomed, shamed for prescribing them.
The number of opioids being dispensed for pain in Canada has fallen substantially in the past few years – almost 20 per cent in Ontario between 2015 and 2017. But some pain specialists say while that’s encouraging, they’re also getting calls from people who were able to work with the help of opioids but can no longer function because doctors have reduced their medication or cut them off entirely. Even one of the leading pain doctors who helped draft the national guidelines for opioid prescribing agrees the pendulum has swung too far.
A big part of the problem is the surprising lack of training in pain management for health-care professionals. Montreal’s Dr. Choinière took part in a study that revealed veterinary schools in Canada provided six times the number of hours of pain-management training than in medical and nursing schools. I heard one patient complain she’d been dangerously overmedicated on the wrong opioid, undermedicated and torturously non-medicated.
Leading multidisciplinary pain clinics have started providing group meditation and cognitive behaviour therapy programs, both shown to be effective in reducing pain. But there’s little to no publicly funded physiotherapy or massage. And acupuncture is provided to people who are addicted to opioids, but not those in terrible pain.
While this debate is simmering quietly on the back burner in Canada, it’s boiling over in the United States. Human Rights Watch issued a report in December decrying the lack of human rights of pain patients who are denied adequate medication. Earlier this month, 300 health-care experts, including three former U.S. drug czars, sent a letter to the Centers for Disease Control and Prevention warning that its strict opioid-prescribing guidelines are harming patients. They said patients are living with unnecessary pain, have turned to illegal drugs, sometimes with fatal consequences, and committed suicide.
Oregon is poised to enforce new, controversial legislation that will end Medicaid coverage of opioids for thousands of chronic-pain sufferers. Five conditions will be covered and all other patients must be tapered off opioids completely. However, the state will start providing physiotherapy, acupuncture and yoga to chronic-pain patients.
The links between chronic pain and opioid overdoses need more study. In a report last year, the BC Coroners Service found that half of the 870 overdose deaths they reviewed involved people who’d been treated for pain. But only 10 per cent of them had an active prescription for opioids when they died; the vast majority died from the toxic street drug fentanyl, which is flowing in from China.
Bioethicist Daniel Buchman, of Toronto’s Krembil Brain Institute, sees the opioid crisis as Canada’s biggest public-health emergency, but chronic pain is right behind it. “I think that the opioid crisis is a concurrent epidemic that we have alongside the epidemic of chronic pain. They’re separate but also related.”
Equal access to pain treatments is paramount. “People who use drugs are also in lots of pain and historically have also had their claims to pain dismissed and undermined and they are, as a group, less likely to experience good-quality care and access to pain treatments.”
Society’s dismissive view of pain is responsible for the historical underfunding of treatments and research, according to Dr. Buchman. “Our general cultural attitudes toward pain in the West … you should be able to pull yourself up by your bootstraps and get on with the day and don’t complain, we don’t want to hear about it.”
But Canadians will soon be hearing more about pain. The federal Health Minister, Ginette Petitpas Taylor, is expected to announce a national task force on pain, perhaps next week at The Canadian Pain Society’s annual meeting in Toronto. Advocates have been fighting for years for this but the Harper government rejected the idea in 2012.
There’s stiff competition for health-care dollars these days, but just the creation of a national pain task force could begin a radical shift in the way chronic-pain patients are viewed. It wouldn’t cost anything for the Health Minister to say chronic pain is real and patients shouldn’t be stigmatized.