By Sabina Rebis, M.D. and Joseph P. Shaw
Most know the game of “Telephone”: Children sit in a circle, one whispers a phrase into another’s ear, then that person whispers it to the next child, then the next. The phrase travels around the circle, one cupped hand over ear at a time.
Then it returns to the first child — who usually disintegrates into giggles at the nonsense of a recycled sentence mangled by misinterpretation.
But what happens when that game of “Telephone” becomes metaphorical — in the context of marketing and medicine?
The most recent public health crisis in America — the 20-year-plus opioid epidemic — arguably started with a seemingly benign five-sentence letter published in a prestigious medical journal. The writers concluded: “Despite widespread use of narcotic drugs in hospitals, the development of addiction is rare in medical patients with no history of addiction.”
It was a small spark that started a brush fire.
Local medical professionals acknowledge that today’s opioid crisis had its roots in choices made a decade or more ago, often with a patient’s best interests in mind, but with faulty information about how addictive painkillers could be. Not surprisingly, money was another root cause, with choices driven by changes in the way doctors and hospitals were reimbursed by insurers.
The result was an unintended consequence, but a devastating one: Addictive opioids were made widely available by doctors, sowing the seeds of the current crisis.
“Early on, I remember doctors and nurses saying, ‘We don’t want to give this stuff to people — they’re going to get hooked.’ But the newer drugs supposedly were not addictive in the same way,” said Robert Chaloner, who has been a hospital administrator for 35 years, now at Stony Brook Southampton Hospital. “As an industry, it was, like, ‘What’s the harm? Give them the stuff. Because the stuff isn’t really that bad—this is the new thing. We’re not giving them morphine.’”
Today, he sees the fallout in his own community on the East End — young and old, locals and celebrities, rich and poor. “It’s everywhere. I mean, it’s to the point where I never used to think to worry about it. But I find myself telling my kids over and over again, ‘Don’t touch this stuff. Don’t touch this stuff.’”
He added, “Everybody is susceptible to it — I really believe that. It’s every spectrum of society right now.”
A Breakdown in The System
The single paragraph, under the headline “Addiction Rare In Patients Treated With Narcotics,” appeared in the New England Journal of Medicine in 1980. Written by Jane Porter and Dr. Hershel Jick of Boston University Medical Center, it claimed that, among nearly 40,000 patients at the hospital, nearly 12,000 had received at least one opioid narcotic painkiller—and there were only four cases “of reasonably well documented addiction in patients who had no history of addiction.”
That 1980 letter spawned a series of subsequent scholarly articles that both cited its conclusions and expanded them to argue that patients were “literally at no risk for addiction,” that “properly administered opioid therapy rarely if ever results in ‘accidental addiction’ or ‘opioid abuse,’” that “medical opioid addiction is very rare.”
In June 2017, the New England Journal of Medicine published another letter, from a group of four doctors in Toronto, Ontario. It concluded that there were 608 citations of the letter in subsequent research, many using the letter’s conclusions “heavily and uncritically,” they said, to sell the idea that opioids were generally non-addictive.
More startlingly, there was a “sizable increase” in the number of citations after the introduction of OxyContin in 1996, the researchers said — a long-acting opioid that, a little more than a decade later, would be the subject of federal criminal charges, with its makers admitting to misleading the medical community and patients about how addictive it was.
The Canadian doctors concluded that the short 1980 letter, and its subsequent citations, “contributed to the North American opioid crisis by helping to shape a narrative that allayed prescribers’ concerns about the risk of addiction associated with long-term opioid therapy.”
On the Upper East Side of Manhattan, a 31-year-old doctor by the name of Russell Portenoy, based at Memorial Sloan Kettering, witnessed the agony of cancer patients — and the improvement in their quality of life when pain was closely controlled. He extrapolated that those with other chronic pain might benefit.
Studies on 38 subjects found that only two of them had a problem with medication management. Both also had a problem with prior drug addiction.
What followed was a case of opportunism. Like ransom letters, sentences from scientific publications were chopped up and glued together and contorted into mass marketing campaigns by pharmaceutical companies peddling pain medications.
“It is a very well-known fact that patients with advanced cancer have significant pain,” states Dr. Natalie Moryl, an internist who specializes in treating pain in terminal patients and who oversees the Palliative Care Unit at Memorial Sloan Kettering, the nation’s premier cancer treatment facility in New York City, where Dr. Portenoy was previously based.
“Appropriate pain management is really, really important for the terminal patient’s quality of life,” she said. “In the cancer community, we use opioids for somatic pain and neuropathic pain, and they work well.”
But pain in a general sense is highly individual. The brain’s interpretation of pain is illusive: Although pain is clearly the result of stimuli of nerve fibers in the body, due to trauma or damage to tissue, it differs in its interpretation based on each patient’s unpleasant emotional experiences, coping styles and genetic make-up. Physical and emotional pain stimulate the same limbic regions of the brain; subjective physical pain can mask depression.
Opioids not only block the pain pathway to specific brain regions, they also activate the reward system—flooding the circuit with dopamine that brings on feelings of pleasure. The overstimulation of this system is habit forming. Dopamine imprints this stimulation in memory and teaches the patient to do something again and again without thinking about it.
Pain relief via euphoria to overcome depression was not the goal of the pain management movement at first. Nevertheless, incorporating such as subjective measure into the assessment of quality of care led to mismanagement.
“Clearly, there was a breakdown in the system,” says Dr. Moryl. “Physicians tried to apply the same principles of pain management to patients with non-cancer-related pain.”
The ‘Pain-Free Patient’
When it comes to healing, doctors often face the pressure of a quick fix: “You’re a doctor — do something!” But for the longest time, Mr. Chaloner notes, pain management was not the same as pain elimination.
“Historically, pain was always seen as just something that happens as part of the healing process,” he said. “The notion that you just have to kind of see your way through it.”
But, 15 years ago, Mr. Chaloner said, there was a sea change: “Suddenly, for whatever reason, the notion was that pain is … that people don’t need to be suffering.”
The change was driven, not surprisingly, by financial considerations.
Health care facilities began administering a survey called HCAHPS — Hospital Consumer Assessment of Healthcare Providers and Systems — to measure patients’ evaluations of the care they received. At a time when “value-based” health care was seen as a way to improve quality, the patient survey results were connected to reimbursements that hospitals and doctors received.
Mr. Chaloner noted one question that was included on the survey: “Did the staff adequately address your pain?”
“We were rating people’s pain,” he said — the survey used familiar smiley faces to simplify the ratings system, and often hospitals were penalized if a patient chose anything but “most satisfied.”
At the same time, OxyContin — a slow-release form of the opioid oxycodone — came on the market, claiming (falsely, it turned out) to be an effective opioid pain reliever with virtually no risk of addiction. The aforementioned studies at the time were suggesting that the risk of opioid addiction was widely overblown.
The result, Mr. Chaloner acknowledges, was that medical professionals began “very liberally prescribing” pain medication, both in the hospital and upon discharge. “Someone would go home with a hundred oxycodone,” he said. “At the end of that bottle, they’re hooked.”
“During my day, we would ask [patients] every day, ‘How is your pain?’ and we gave it a scale from zero to 10,” recalls Dr. Shawn Cannon, an internist in Amagansett who specializes in the treatment of opioid addiction. “We were supposed to get it as close to zero as we could. There was a push toward our training making sure every patient had as little to no pain as possible.”
“For the providers, it wasn’t malicious,” Mr. Chaloner said. “We really believed that … I mean, that’s what we heard — we were letting people suffer.”
That era of the “pain-free patient” can be traced to the last decade of the 20th century. Before the shift, the Core Principles of Pain Management, stated by the American Pain Society in the mid-1990s, were almost militaristic in their restrictiveness.
But in 1999, a new statement was drafted: Patients had the right to management of pain, that “the patient’s self-report of pain was the single most reliable indicator of pain,” and that physicians needed “to accept and respect this self-report, absent clear reasons for doubt.”
There was a domino effect. “In 1999, the statement was adapted by the U.S. Department of Veterans Affairs. In 2001, the Joint Commission adapted pain management standards,” says Dr. Richard Rosenthal, a psychiatrist and addiction specialist at Stony Brook University Hospital. “In 2005, Medicare picked it up and started to link reimbursements based on patients’ determinations, whether their pain was adequately treated or not.”
And so, the laminated printout of cartoon faces, rating pain from a wide grin to a deep frown, began to dictate hospital reimbursements in an already indebted health care system.
“Now, all the hospitals are pushing doctors to make sure their pain is adequately taken care of — and usually that means prescribing opioids,” added Dr. Rosenthal.
There were less scrupulous doctors providing easy prescriptions. But Mr. Chaloner notes that much of the damage was, again, unintended. “There’s always some bad actors, but I’ve never run across a doctor who wanted their patients to get hooked,” he said. “But they were actively being evaluated on the management of pain.”
A Fifth Vital Sign
Dr. Daniel Van Arsdale, the palliative care director and Family Medicine Program director at Stony Brook Southampton Hospital, also trained in the “Pain as the Fifth Vital Sign” movement, which trained doctors to prescribe “stronger and stronger pain medication to get patients out of pain,” he recalls.
Dr. Cannon said doctors were writing the prescriptions “very freely.” “Vicodin, or hydrocodone, was a lesser controlled substance at that point … The Vicodin was flying like candy, because it did not need, necessarily, a physician’s signature.”
Coincidentally or not, in 1996 Purdue pharmaceuticals developed OxyContin, an extended release version of oxycodone. “The push in education at that point was fewer pills in the community,” Dr. Cannon said. “So we thought we were doing something good — because now instead of giving 240 pills a month, you gave 60, so that, theoretically, put fewer pills in the community. It’s not what happened — but that was the thought process at the time.”
According to a study published by Dr. Art Van Zee in 2009, between 1996 and 2001, pharmaceutical companies conducted all-expenses-paid speaker-training conferences at resorts, recruiting health care professionals to train as national speakers. Compiling prescriber profiles based on prescriber habits, drug reps targeted these doctors with stuffed toys, hats and dinners. Purdue Pharma, the maker of OxyContin, paid more than $40 million in incentive bonuses to drug representatives who increased sales.
The company also started a coupon program (“Get in the Swing With OxyContin”) that provided patients with a free limited-time prescription for a seven- to 30-day supply. A total of 34,000 coupons were redeemed by 2001.
Financially it paid off: The heir to the Purdue empire just purchased a $22 million mansion. But, for patients and doctors, it backfired. Opioids will likely kill more than 50,000 Americans this year.
Part of the fallout was that the pain control movement failed to distinguish pain from human suffering. Trainees were taught not to question a patient’s subjective idea of pain; at the same time, addressing mental health or addiction openly was not the norm either.
“In the 1990s, there was more reported chronic pain,” Dr. Rosenthal said, citing factors including musculoskeletal problems resulting from increasing rates of obesity and the growth of the aging population. This was coupled with a build-up in expectation for pain relief — at least partially due to good marketing.
Structural factors like poverty and substandard living and working conditions also led to a generalized sense of what was perceived as “pain.” This is reflected in the statistics: “Regions with the lowest levels of social capital have the highest opioid overdose rates,” Dr. Rosenthal noted.
The unspoken truth was pain pills silently doubled as happy pills — a deceiving solution to the ache of life.
“The thing that completely got missed, unfortunately, is that more than 10 percent of the U.S. population has some kind of addiction,” Dr. Moryl said. “This had been invisible for a long, long time.”
She compares the problem of addiction to cancer. “Many years ago, when cancer was not named, people tried to hide it, because it was embarrassing to have cancer — it was taboo, it was not to be spoken about. We treat addiction the same way.”
There is still a stigma in talking about mental health. In retrospect, those pointing to a frown on the chart of facial expressions prior to their first opioid prescription may have been seeking help — but didn’t know for what.
Pushed To The Streets
Prescription monitoring programs mandated by states have made it harder to obtain legal prescriptions for opioids, pushing many opioid abusers to seek treatment. But others find themselves in the grip of addiction—and seeking relief on the streets.
“I don’t believe any legitimate doctors are giving out the prescriptions the way they used to,” Mr. Chaloner said, noting the tougher new climate for doctors. “The ones who are, are risking their own license.”
He noted that doctors and hospitals now use I-STOP, an internet-based prescription monitoring program that provides a database of pain medication requests by patients, to identify those who might be feeding an addiction by “doctor-shopping,” or visiting various providers to try to plead, cajole or threaten a prescription.
“Probably in the last 12 years or so is when you started to see it,” Mr. Chaloner said. “All of a sudden, you hear doctors and nurses saying, ‘They’re a pain medicine seeker. They’re a drug seeker.’ You see it all the time. You hear it all the time.”
Mr. Chaloner said he and other hospital administrators were recently in the emergency room to observe operations, when they watched a man in his early 30s pull up outside. “The car drove up in front of the ER. He got out of the car, perfectly normal,” he said. “Halfway through the door, he suddenly doubled over like he was in pain, and hobbled in.
“I’m not a clinician, but it was clear what he was up to,” he continued. “And the staff told me this guy shows up [all the time] — they can’t get rid of him. He just sits there and harangues and screams and yells.”
There was a time, Mr. Chaloner acknowledges, when that patient might get a prescription — “like giving candy to a screaming child.” No longer — the I-STOP system makes it virtually impossible.
Which hasn’t changed things for the medical staff. “They take a lot of abuse. The staff gets threatened, things thrown at them. It’s a very difficult place to be for our doctors.”
Those who can’t afford treatment or who cannot afford to buy opioids on the street with the new regulations in place are turning to heroin and other synthetic opioids.
According to Dr. Rosenthal, fentanyl, a powerful synthetic, is even cheaper to manufacture than heroin. And because fentanyl is used as a filler in the illegal drug, by default, heroin is now cheaper too.
“It has become much easier to get a hold of heroin,” he said. “A pure gram, which was $3,200 in 1981, went down to less than $500 in 2013.”
But these man-made street drugs have deadly consequences. “People are going after fentanyl because they hear it’s so powerful. A lot of people don’t know what they’re taking, which is why you end up with so many fatal overdoses,” Dr. Rosenthal said.
It is these street combinations that have led to the increase in opioid overdoses. In New York State, the street combinations are responsible for more than 80 percent of all opioid overdose fatalities, according to Dr. Rosenthal.
“I think Suffolk County has a bigger issue than many other places in New York,” adds Dr. Van Arsdale.
Meanwhile, insurance coverage is short-sighted. “We’re using data right now from 1958 alcoholism studies,” Dr. Cannon said. “I don’t know how that got extrapolated to our understanding of addiction to heroin. And we don’t have enough studies on heroin — they’re ongoing.”
Although the maximum amount of coverage for a substance use disorder that insurance companies will agree to cover is 30 days, both Dr. Cannon and Dr. Rosenthal agree that recovery is really a six-month process at a minimum.
“We fight for treatment for people,” Mr. Chaloner said. “If you’re an addict, and you’re not really too organized in your thinking anyway — all your focus is on drugs—fighting a managed care company to get 30 days of treatment is not gonna happen. So people just keep spiraling down. It’s just horrible.”
Mr. Chaloner said understanding and recognizing addiction, and its symptoms, should become as ubiquitous as knowing the five signs of a stroke.
“We have a tendency to demonize—it’s a disease, it really is,” he said. “Some people are more inclined to become addicted. And then once they are, you’ve got to treat them like they’re sick. I don’t think jailing addicts is the way to go.”
According to Dr. Cannon, it’s not just a medical disease. “This is a very complex disease, and if we want to be successful, we have to make sure the patients are engaged in their treatment and doing the work, not just showing up in an office visit and, here is a prescription, go get it filled.”
Although maintenance medication like buprenorphine, more commonly known as Suboxone, can be key to treatment, it’s not really as simple as popping a pill. “It would benefit every public health department in every county of New York to have people trained in addiction,” Dr. Van Arsdale maintains.
“As a medication, buprenorphine is a lifesaver,” Dr. Rosenthal said. “If used alone, it is a pretty safe medication.”
The problem surfaces when it ends up misused. “If mixed with alcohol or benzodiazapenes [anti-anxiety medication], you may get enough of an additive effect to make a serious respiratory depression.”
With caution thrown to the wind, history has a nasty habit of repeating itself, Dr. Cannon said: “We’re going to end up with the same problem we did with opiates — people are going to be taking them like candy.”
Sabina Anna Rebis, M.D., FAAFP, is a family medicine physician based in the Hamptons, Westchester and Connecticut who recently completed a residency in family medicine at Stony Brook University Hospital and Stony Brook Southampton Hospital. She writes on health and wellness for regional and national outlets.
Joseph P. Shaw is executive editor of the Press News Group.
Stony Brook University interns Dorothy Mai and Elizabeth Pulver contributed research to this story.