Since the opioid epidemic was declared a public health crisis in 2017, it has claimed the lives of nearly half a million Americans. High-profile cases like that against Purdue Pharma and the Sackler family put the focus on prescription drugs, but the reality is far more complicated, says Elizabeth Chiarello, author of “Policing Patients: Treatment and Surveillance on the Frontlines of the Opioid Crisis” and a former fellow at the Harvard Radcliffe Institute. Over the course of 10 years, she spoke to healthcare workers who face difficult choices between treating and punishing patients, and the problems that have arisen from policing drugs at the pharmacy counter. The Gazette spoke to Chiarello about what she learned. This interview has been edited for length and clarity.
At the beginning of your book, you say the problem is pain, not drugs. Why should pain be centered in conversations about the opioid epidemic?
When we talk about the opioid crisis, we usually categorize two groups of people: those with substance use disorders and those in chronic pain. We act as if these are two different groups of people who have little in common, with the implication that people with pain have a legitimate claim on opioids and the people with substance use disorders do not. Pain is the throughline that connects these two groups. Whether we’re talking about pain from mental health disorders or the pain of trauma, substance use disorders are often a mechanism of self-medication or avoiding pain. People with substance use disorders are often taking opioids not to chase a high, but because they’re trying to avoid the pain of withdrawal.
It’s worth mentioning that when we think about pain, the boundaries we’re willing to set around other people’s bodies are very different than the boundaries we’re willing to set around our own. When we are in pain, we are very eager to stop it, and we’d want any resources available to help us.
“People with substance use disorders are often taking opioids not to chase a high, but because they’re trying to avoid the pain of withdrawal.”
During your research, you were surprised to learn pharmacists are on the front lines of this crisis.
Culturally, pharmacists don’t loom particularly large in our collective imagination; they’re often behind the scenes filling prescriptions and we don’t always know their names (whereas we tend to know a lot about our doctors and are very selective about who we choose). People often believe that pharmacists just dispense whatever it is that the doctor orders. But in fact, they are professionals who work under their own licenses; they have extensive discretion at the pharmacy counter. Pharmacists act as medical, legal, fiscal, and moral gatekeepers; they balance those different gatekeeping roles in different organizational settings, but ultimately decide who receives medications.
Pharmacists use something called prescription drug monitoring programs, or PDMPs. What are they and what role do they play?
PDMPs are two-tiered “big data” surveillance systems. When a patient goes to the pharmacy with a prescription for an opioid, the pharmacist dispenses the medication and then sends that information to the organization that runs the PDMP. It varies from state to state but could include the Board of Pharmacy, the Board of Health, the Department of Justice, or Department of Consumer Affairs. They then partner with a private company that compiles that information and feeds it back to healthcare providers who can use it to make decisions about patient care.
However, they also feed that information to law enforcement, who can use it to make decisions about targeting healthcare professionals and access individual patient data. You might wonder, isn’t this all covered under HIPAA? And the truth is it’s not. PDMPs are not afforded the same privacy protections as other healthcare data. We see both physicians and pharmacists reorienting towards policing, away from care, and toward using this surveillance system. As a result, patients are routed out of healthcare and left incredibly vulnerable.
One aspect of the opioid crisis that has received a lot of media attention is the role of organizations like Purdue Pharma. In what ways has their role — while not to be minimized — become an oversimplification of what’s happening?
The Purdue story has been everywhere; it’s been in bestsellers, movies, TV shows, and in lawsuits. The problem is not that the story is wrong, but that it’s incomplete. It places a lot of blame on the shoulders of a single medication and a single company. What we lose is the last 100 years of drug policy, where we’ve seen the drug policy pendulum swing back and forth between medicalization and criminalization.
For example, at the turn of the 20th century, there were a lot of middle-class, rural housewives who were hooked on opium and it wasn’t considered a social problem. But when Asian men came over to build the railroads, we saw the criminalization of opium. Then in 1914 we passed the first drug law, the Harrison Narcotics Tax Act, that made it illegal to give people medication just for the purposes of preventing withdrawal. Supreme Court cases followed, and we saw the arrests of thousands of physicians and pharmacists that led to a chilling effect around opioids for around 50 years. In the 1980s we had the hospice movement in England that argued people shouldn’t have to die in pain. On the heels of that movement followed the pain-management movement in the United States that said if people shouldn’t have to die in pain, they shouldn’t have to live in pain either. They pushed for increased access to opioids and drew attention to chronic pain patients who had been undertreated for decades.
If you don’t know that story, it seems as if OxyContin came out of nowhere and did an extraordinary amount of harm. But a lot of the increase in prescribing that we saw at the end of the 1990s was really a corrective to underprescribing that had been happening for decades before that.
You go as far as saying that we should reframe the current epidemic as an overdose crisis, rather than one of opioids.
With drug policy, we have a tendency to put our blinders on and focus very narrowly on a single drug or class of drugs. Crack was the problem in the 1980s and ’90s, then meth was the problem in the early 2000s, then prescription opioids, then heroin, and then fentanyl, and now xylazine [also know by street name “tranq.”] But when we treat these as individual, isolated crises, we miss the throughline and the larger story. The problem is not opioids. The problem is overdose. I think we need to talk about it as both an overdose crisis and a pain crisis, because millions of people are suffering in chronic pain and cannot get help.
“We need a three-pronged approach to addressing the overdose crisis, one that’s grounded in treatment, harm reduction, and prevention.”
What stories stuck with you the most during the course of your research?
My dad is a doctor. Hearing what doctors have to say and the ways they feel trapped is hard. And for some doctors, the kind of callousness that they bring to their patients was incredibly disheartening. You know, the doctors who are like, “I tell the patient, I’m going to taper them down, and I don’t care how they feel about it.” Or they stop seeing patients if their urine tests come back positive.
But then there are other physicians like Megan. She worked in a federally qualified health center, which ironically, gave her a little bit more leeway than those who work in private clinics. She had a lot of patients with substance use disorders, so she went out and got the credentials she needed to treat those patients. She had a lot of patients in pain, so she went out and got those credentials. She pushed back on other doctors who were using punitive mechanisms. She was the quintessential patient advocate, and doctors like that really give me hope.
There was a police officer in California who lost his brother to overdose and that drove a lot of the work that he did. He experienced a tragedy, and then his mission became trying to prevent that from happening to other people.
What next steps do you recommend to change our approach to this issue?
We need a three-pronged approach to addressing the overdose crisis, one that’s grounded in treatment, harm reduction, and prevention. When people think about treatment, they often think about either a 28-day inpatient treatment facility or self-help programs like Narcotics Anonymous. But in head-to-head comparisons, we know medications for opioid use disorder are the most effective treatments. We should also expand the types of pain treatment that are available; manipulative therapies like massage and Rolfing therapy can really help.
Then harm reduction. That includes things like Narcan, syringe service programs that provide sterile syringes to people who inject drugs, hotlines like SafeSpot and Never Use Alone, and overdose-prevention sites.
And finally, prevention. I mean capital “P” prevention. We need to uplift our communities and reinforce our social safety net. People have a hard time finding housing, jobs, access to high-quality healthcare. Addressing these issues is an upstream way of dealing with drug crises. Otherwise, we end up with just one crisis after the next.
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