The air freshener at The Cosmopolitan resembled a middle-school dance: a crush of Axe body spray and sweat. There were low lights beneath fabric swags; strings of crystal draped from the ceiling. The floor sparkled, opulent, and the casino hummed dark inside. Every wall and piece of furniture was decorated in purple, gray, or black—like a nightclub, or a bruise.
Las Vegas felt a little too on the nose for a pain conference, but here we were: over two thousand frontline practitioners gathered together for PAINWeek 2019, the largest medical conference in the country devoted to this specific genre of suffering, held at The Cosmopolitan for nearly ten years. Outside, it was September on the Strip, hot enough to melt your sandals to the sidewalk. Inside, it was impossible to miss the promotional blitz for a show titled OPIUM.
I was here because I’d heard that chronic-pain patients across the country were being denied their medication. Ever since the CDC had issued guidelines in March 2016 indicating a daily-dosage ceiling for opioids of ninety morphine milligram equivalents (MMEs) per day, in most cases, the pain community had been in an uproar. Most pain-medicine health-care providers found this limit alarmingly inadequate; they often saw patients who were stable on much higher doses or even double this number. With the new guideline, many practitioners were forced to taper their patients down to a smaller dose or off opioids altogether, which, though politically responsive, felt medically negligent. Many pain physicians were frustrated by the degree to which opioids and the health-care providers who prescribe them had been unfairly demonized.
Opioids were just one of several tools that health-care providers used for pain management, but many of the others had become less popular in recent years, or weren’t covered by insurance. The potential problem of opioid abuse was managed in a variety of ways, some of which were highlighted at the conference. There were sessions on abuse-deterrent drugs, on alternative medicine, information on dosing practices, a panel on urine drug screening for pain patients, among many others. Essentially, if your patients were abusing drugs, there were plenty of strategies to deter them, treat their pain, and still retain your medical license in the process.
In the Brera Ballroom that first morning, breakfast consisted of a fruit smoothie, a breakfast burrito, coffee, orange juice, and pastries. The program I wanted to see—Managing Chronic Pain with Abuse-Deterrent Extended-Release Opioids: Clinical Evidence and Implications, sponsored by Collegium Pharmaceutical—was scheduled for 8:30 a.m. At the door, representatives from Collegium had scanned our badges so the transfer of value associated with this breakfast could be reported in accordance with the Sunshine Act, a US health-care law that requires disclosure and tracking of financial relationships between pharmaceutical companies and health-care providers. These types of programs were a mainstay of medical conferences, in which a “key opinion leader,” generally a physician or physician assistant, or nurse practitioner with a lot of influence, talks about the latest and greatest in better living through chemistry. Over breakfast burritos and soggy pastries, you took in a series of slides with pharmacokinetic data, maybe a phase 4 trial, some safety profiles. That morning’s program covered a drug called Xtampza ER. The main discussion at many of these breakfasts at PAINWeek was around abuse-deterrent opioids, extended-release versions of drugs that became less effective if you crushed and snorted them or injected them or took them in any way other than the way they had been prescribed. This path of abuse deterrence had become popular among pharmaceutical companies as a way to hedge against the opioid crisis; the first reformulation for OxyContin occurred in 2010, when Purdue Pharma made the drug harder to abuse. What wasn’t described during our sponsored breakfast, but mentioned later in other panels, was the spike in heroin use following the release of the abuse-deterrent formulation.
The Brera Ballroom felt like every other conference meal I’d ever attended: too fancy for regular dining, but not quite a wedding. The room was scattered with eight-foot catering tables, crammed with place settings and too many glasses; along one wall, ostensibly the front, there was a podium and a series of drop-down screens for the slide presentation that would follow. Our table, at one corner of the room, included a physician assistant with the Indian Health Service in New Mexico, a middle-aged woman physician who worked in a pain clinic in upstate New York, and an East Indian couple from Texas. The physician assistant talked about how fentanyl was big where he lived, that it was mostly cut with honey, that all of it had been coming in from China lately. The other big thing his patients used for pain was peyote—but that’s spiritual, he emphasized, so he couldn’t touch that.
Brandy, the pain-clinic physician from upstate New York, leaned over and whispered, “I put everyone on this. It’s a great drug.”
“Oh yeah?” I said.
“I don’t tell them it’s an abuse-deterrent compound, just that it’s new, and safer,” Brandy said.
Safer is a code word among the opioid-patient population. In online forums, these patients trade secrets on how to get the medication they say they need: which pain clinics will see them, who prescribes what, who’s been cut off or forcibly tapered. Many patients who’d been taken off their medication resorted to creative ways to find relief. Maybe they’d start kratom, a psychotropic drug banned in some US states that comes from the leaves of a tropical evergreen tree native to Southeast Asia (the concern among some patients is that it can yield a false positive in drug screening); or they’d try to switch pain clinics; or they’d reserve their medication for when they needed it most, as a way to maximize an individual dose at any one time. There were muscle relaxants, prescription-strength non-steroidal anti-inflammatories (NSAIDs). A few admitted to obtaining fentanyl or heroin, but the conversation was about pain rather than addiction. “Dependent, but not addicted,” remains the constant refrain in groups like these. The fear that the pain might return is enough to keep patients doing whatever they can to stay above it. Everyone is concerned about what happens when they have pain between doses, maybe due to a prescribed-dose failure, which is when doses come at the wrong time and aren’t able to get patients to their next dose without pain, or maybe because the dose just isn’t cutting it anymore—what the medical community calls breakthrough pain. There are other types of failures: predictable incidents (same activity yields the same pain, unpredictable pain); patients performing the same activities have new pain, and the worst—idiopathic pain, or new pain with no known cause or reason. In the end, there’s a fine line between a pain patient and a drug addict, and sometimes patients go back and forth along it. This is what we were effectively discussing that morning, and throughout the conference.
What health-care providers are supposed to do about this problem depends on who you ask. It seems important to be suspicious of patient intentions, even if they tell you the truth.
From working in the ER, I know patients lie. The line between patient and provider is blurry too: I had a friend who worked in our ER four shifts a week and spent the rest of her time at other emergency departments trying to score pain pills.
I found myself standing in line for the exhibitors/industry people rather than the attendee line for registration, where I belonged. Before I left the medical profession to write full-time, and after my stint in the ER, I worked for a multinational pharmaceutical company, attending conferences like this one.
At the companies where I worked, I’d manage the display of data in poster sessions. We would present new or old data (encore presentations), and it was my job to manage a team of medical writers who published the results of clinical trials and health outcomes research. I was not very good at it: Routinely, our agency would not deliver the posters in time or they’d have errors that I’d missed and I’d have to scramble over to a FedEx in the middle of the night to reprint them. I’d spend the rest of my time attempting to understand competitors’ posters, so we could present some sliver of data at the next conference. There was a part of me, however erroneous, that believed I was at PAINWeek to hang posters and make sure key opinion leaders showed up in front of them.
But I was here because I had become a patient too. I attended the panel on fibromyalgia because my internist says I have it, among a host of other autoimmune-mediated issues I’ve inherited over the past ten years: Hashimoto’s disease, adult-onset asthma, endometriosis—plus temporomandibular joint (TMJ) dysfunction, the panel I couldn’t attend because it was too depressing (there is no cure, only management). When I worked in the pharma industry, I spent a lot of time on airplanes and at desks, solitary, without motion. I learned from Ginevra Liptan, the lecturer on fibromyalgia pain, that this is a big part of what’s perpetuated my own pain.
Conferences are tests of endurance. The food is always questionable. Even sitting at this conference for a few days caused my body to seize up; I spent the evenings pacing the Strip in ninety-degree heat but it wasn’t enough. Liptan, too, had fibromyalgia; she used her experience as a patient to help other patients like her. She talked about the rigorous exercise she did to stay healthy, how she spent evenings on the treadmill or the elliptical at the conference hotel. I’ve found that this idea—that providers are also patients—is not uncommon. The attendees of the panel were almost entirely women. Maybe they, too, were looking for something to make sense of their pain.
According to the course objectives at breakfast that morning, we were there to “discuss key issues surrounding the opioid epidemic and consequences of opioid diversion, misuse, and abuse, to review the clinical profile and data supporting an abuse-deterrent option, and explore flexible administration options.” Diversion—when patients sell or divert their prescription drugs from medical to nonmedical or illicit use—was a big part of the discussion. Sometimes patients stick with the same drugs, sometimes they trade up to something stronger, or just different. Diversion happens in a lot of different ways: through patients selling their own prescriptions, certainly, but also when patients stop taking their drugs as prescribed and start crushing and snorting them instead, or injecting them, or taking too many at a time. Any treatment feels potentially dangerous with these patients, according to the health-care providers that treat them, like pain patients could all ride off the rails at any moment and crash into a lifetime of drug addiction and dependence, and eventually, with some patients, an overdose, maybe even death. But it’s more complicated than that.
At the end, nobody had any questions. Most of the table had experience with the drug and came mostly for breakfast.
Flipping through the conference app, nearly all the sessions had cheeky titles: Icebergs, Oceans, and the Experience of Pain; The Gang that Couldn’t Shoot Straight: Reconsidering the CDC Guideline; I’m Not a Doctor, But I Play One in DC. I tried to select the content that seemed relevant to my query—programming about policy, about how frontline practitioners are expected to treat patients. At the CDC Guideline panel, the room was packed: Everyone wanted to hear from Gary Jay, a neurologist and a clinical professor of medicine at UNC-Chapel Hill, who was discussing the CDC guideline for opioid prescribing and its failures, which the room believed were many.
It’s like this, Jay explained: These are pain docs, and they feel they were unfairly demonized in this process. Yes, there were bad actors, but not as many as described. Yes, there are pill mills, but most of them have been shut down. They still show up in the papers from time to time, always doctors with massive clinics, huge prescribing habits, but the problems don’t generally rise to the surface until there are at least one or two suspicious patient deaths. In the meantime, pain doctors like Jay feel that the government is interfering with physicians’ and other health-care practitioners’ ability to do their jobs. The government should not be regulating how many MMEs you prescribe—that just creates more paperwork and results in more prescriptions for the same drugs. Following a Washington Post article published in August 2019, there had been a lot of discussion around the fact that US doctors write a lot more prescriptions for opioid medications than those based in Canada. What many don’t realize is that a lot of physicians in the US can no longer write prescriptions for more than a few pills at a time because of new state legislation. To get around this, they write more prescriptions. In Canada, you could write one prescription for any number of pills and three refills; in the US, that equaled at least four prescriptions, and possibly more, depending on the dosing. In Florida alone, a doctor is prohibited from writing more than a three-day supply of opioids at a time—seven days’ worth if an exception is documented—meaning Florida physicians are stuck writing hundreds of prescriptions for their chronic-pain patients.
The presenters kept returning to a refrain of what now? What do we do if our patients are abusing—though they never say “abuse,” they say “opioid use disorder,” or OUD. At one panel on trauma and pain, the speaker, a middle-aged white guy and physician, told us that yes, these patients have bodily pain, but they also experience emotional pain, which can amplify the physical pain, a phenomenon well established in the literature. Other speakers skirted the issue, talking about how insurance companies will reimburse for more invasive procedures, such as back surgery, but won’t pay for acupuncture or physical therapy. One panel focused mostly on helping patients cultivate better coping skills so they could learn to manage their pain more effectively, to learn to move, noting that a lot of chronic-pain patients have kinesiophobia, or a fear of movement, that prevents them moving and essentially worsens their pain, particularly among patients with arthritis or fibromyalgia. Another panel was about finding better ways to manage urine drug screening, a mainstay among pain patients, though not every company has the screening procedures that might be most helpful. They told us that all providers should use urine drug screens with their patients at every visit, to see if their opioid use has deviated from how it has been prescribed. I asked the woman next to me (a middle-aged, white, family-medicine physician from Maryland) if she drug tests her patients every time. “Of course,” she said, giving me a look. But in the online forums where patients discuss their pain and treatment, this isn’t always true—some docs test, whereas others test intermittently or not at all.
On Saturday, I attended a panel where the speakers told us that some people are more wired for addiction than others. We know of this genetic component, of course, because of the way that alcoholism and drug abuse carves a line in families. What is surprising is that the gene for addiction is not common, which gives credence to the idea that most of these pain patients are “dependent, but not addicted.” This is part of what makes the opioid crisis so complicated and difficult for the public to understand. There are some patients who take OxyContin or even fentanyl, a drug that is about a hundred times more powerful than morphine, and remain stable on the same dosage for years, even decades. Then there are others whose drug needs exceed their practitioner’s prescribing abilities, who are cut off and turn to street drugs, and it’s often hard to tell who is who.
As the panel concluded, two women who were sitting in front of me turned to each other.
“Do you want to go get margaritas?” one asked.
“Ab-so-lute-ly,” the other replied.
Typically, when any patient arrives to his or her physician’s office or the emergency room, there are four vital signs to check: body temperature, blood pressure, pulse, and breathing rate. The notion of pain as a fifth vital sign originated in the midnineties, when it entered the public consciousness, and then was officially adopted as such by the Veterans Health Administration in 1999. All initial patient encounters were supposed to include screening questions for pain: Do you have pain and if so, how severe is it? Can you rate your pain on a scale from zero to ten, zero being no pain and ten being the worst imaginable? What’s the quality of your pain? Does it move anywhere? The Joint Commission, which accredits hospitals and other care facilities in the US, followed the Veterans Health Administration’s lead in 2001, incorporating into its requirements for accreditation a pain assessment for every patient upon admission.
The concept of pain as a vital sign is not working and hasn’t worked for a very long time, possibly ever, but the American medical community is still using it because of the Joint Commission’s recommendation. Clinicians are even prompted to do so—every interaction on the software platform Epic, the largest electronic medical records system in the US, tells the user to ask if the patient is in pain. In my training as an EMT, I’d have to ask the patient about pain as part of my checklist, after making sure I was wearing appropriate PPE and ascertaining the patient had a patent airway, was breathing, and that their body was circulating blood the way it should.
Jay explained that this sort of thing is representative of a larger problem that began in the late 1990s, when insurance companies either stopped covering or drastically limited reimbursements for anything besides opioids. Biofeedback therapy, acupuncture, and other non-pharmaceutical pain-management tools were dropped from coverage, resulting in more prescriptions. The opioid crisis didn’t happen overnight—it was a slow, steady burn comprising issues that appeared small and isolated at the time, but which accumulated into the catastrophe we know today.
When I spoke with Jay by phone in December 2019, the news was terrifying. Chronic-pain patients were finding it nearly impossible to see anyone who would treat their condition. “There was a study done in Michigan that showed 41 percent of 189 practices would not take a patient who was taking an opioid. Forty-two percent would at least look at the patient, and 17 percent said give us some more information. But 41 percent wouldn’t see the patient,” he explained. Jay mentioned a patient who completed suicide because they couldn’t wait a week or two, or because their insurance denied them the option of seeing him, or because they couldn’t get there. Facebook groups devoted to pain management describe many similar stories of patients suffering from pain who have completed suicide after being unable to find a clinician willing to see them—let alone treat them. Whether due to cancer or chronic musculoskeletal issues, suffering from chronic pain at least doubles the risk of suicidal ideation or death by suicide compared to the general population. “I had a patient from another state who sent me an email and wanted to become a patient, and I told her I need to see your records and your referrals and I’d be happy to see you. This was a chronic-pain patient who’d been taken off her meds. And two weeks later, I found out she killed herself.”
Lately, on Facebook, the chronic-pain patient groups and my friends’ timelines have started to look the same. With the disbanding of Purdue Pharma and the development of a public-benefit corporation, some pain patients worry that access to their pain medication will be limited even more, that the DEA will soon touch everything, that it might be useful to save pills if you can. Several people in the Don’t Punish Pain group have been offered ketamine or Haldol in the ER to manage their pain, though it doesn’t work. Another asks why his urine drug screen is showing a positive result for a drug he doesn’t take.
I joined all these groups because I wanted to understand what chronic-pain patients did with their time, especially during lockdown, how they passed the hours. The ways in which they tried to beat the clock, knowing that they only had to get by long enough to take the next dose. Dependent, but not addicted. The porches of dosing are slung between acres of arid landscape and we are drifting through. Everyone trying to get to the next meal, the next Zoom meeting, the next precious pocket of time away from their kids, away from family. Time stopped but also stretched.
When I develop another weird, painful rash on my body, or wake up some mornings and my elbows don’t work, I take blurry photos and send them to my internist, who says he doesn’t know what the rashes are, but maybe they’re ringworm? I have not spent any time in locker rooms. It is not ringworm.
My husband has a medical-marijuana card in Illinois, where we live, and he gets access to all the best formulations. There is a woman named Mindy who won a James Beard award and makes fantastic edibles here in Chicago. I am taking them because they put a dent in what I feel every day. It’s just a dent, or maybe a suggestion of a dent. I never thought of myself as someone who would use this to get through the day. But I am, sometimes.
The truth is, if you are disabled, not a lot has changed. You have to say no all the time to gatherings, to social events, pandemic or not. You say maybe you’ll go to this reading or that concert or dinner and then suddenly you can’t. If anything, the pandemic has made things more accessible. I attend a lot more readings at home, on the couch or in bed. At least once a week, I tell my husband that I am glad that we are quarantining together. Not everyone has this luxury. I have friends whose lives have become more connected since the pandemic, people who can now participate virtually. Maybe this is what’s referred to as a silver lining.
I wonder what all the members of the pain groups are up to. How are they managing? How have they been coping? They were still there, these people, pandemic layered over pandemic, like sediment. I wanted to know what was happening a few layers down. In one group, they put the suicide hotline in the header, so people can have someone to call.
I tried to sign up for an LSD microdosing trial, only to find out I live too far away. Ketamine is now FDA approved, but I won’t qualify: It’s only for the most intractable of depressions. I still wash my hair, which is probably worth something in all of this. It has gotten very long. When my friend’s barn reopens, I go there and ride other people’s horses, casting circles slowly around the ring, watching hoofprints in the sand. It’s a distraction from the reality of my body, which comes into sharp focus whenever I get off the horse and brush him and put him back in his field with his friends. The horse I’m riding is sometimes lame, takes a wrong step here or there. His owner is trying to figure out what is wrong with him. Is what I’m doing drug-seeking behavior?
At my doctor’s office for a masked annual physical, he screened me for depression using a series of standardized questions he read off the computer. I knew it was because Epic prompted him to do so. Northwestern Medicine is part of a program that uses an installation of Epic that depression-screens all patients. I told him that if anyone said they were fine these days, that should trigger a depression-screen follow-up. He laughed. I laughed. He tried to ask another question.
“It’s like choose your own adventure,” I told him, waving him off. Just pick something and move on. He clicked something on the screen. We moved on.