Have you ever noticed how quiet a cold morning feels? Something about the coldness works its way into the sound of things. Birds get scarce, critters act cautious, cars drive slower—like there’s an unspoken agreement not to rupture the silence. When something does break it—an engine sputtering, a child’s wail, an outburst of finch chirps—it feels like blasphemy. In the deep cold, even the dizzy morning light takes on a somber quality.
I’ll never forget those mornings in the winter of 2013, when I was pregnant with my elder daughter. Every Saturday I walked a mile of winding back-roads through Lafayette, Colorado to get the only weekend bus to Boulder, where I was dosing daily on methadone.
Initially, that walk felt calm and lovely, and gave me time to reflect on my coming baby and newfound sobriety from heroin. But as my belly grew heavier and the sidewalk slicked with ice, I began to resent the effort it took just to get my medication. I was looking forward to earning my “take-home”—a sealed, single dose of methadone that I would be permitted to bring home once a week, on Fridays, so that I wouldn’t have to travel to the clinic on Saturdays.
Methadone administered for opioid use disorder (OUD) is one of the most highly regulated medications in the United States. It’s a long-acting opioid that prevents withdrawal and curbs cravings for short-acting opioids that create euphoria, like heroin or fentanyl. Both methadone and its newer alternative, buprenorphine, have an enormous body of research supporting their efficacy for OUD treatment. They reduce fatal overdoses, the risk of contracting HIV or hepatitis C, relapse and other harms around compulsive opioid use.
Methadone is also prescribed for pain; pain patients can fill their methadone scripts in a pharmacy just like any other medicine. But federal law sets very different standards for patients who use the same drug for OUD.
Methadone for OUD can only be dispensed by a licensed provider—often referred to as a “methadone clinic”—and patients must show up every morning to swallow their dose in front of a nurse. After 90 days of satisfactory behavior, patients become eligible for their first “take-home.”
Our therapeutic alliance was immediately and irreparably shattered.
Three months into recovery, I assumed my take-home would be granted, because all of my urine tests had come back negative for everything besides methadone. I’d regularly chattered away to the clinic counselor about how frigid those mornings were getting, how exhausting the pregnancy was, and how good it would feel to finally sleep in on Saturdays.
But the month prior, I had also shown up one morning crying. I’d talked to the counselor about mood swings, difficulties with my fiance, and symptoms of post-traumatic stress disorder that were flaring up now that I was no longer suppressing them with heroin. This was all stuff that I expected to feel safe discussing with a treatment counselor.
When it came time to apply for my take-home, however, my request was denied.
The reason? My counselor felt I was too emotionally unstable. She expressed concern that I might take my dose early in an attempt to quell my difficult feelings, and that this could jeopardize my pregnancy.
I felt shocked—and utterly betrayed. Not only was my counselor aware how difficult those long walks were getting as the Colorado winter and my pregnancy progressed in tandem; she had also failed to raise any of her concerns with me in our sessions before denying my take-home. Our therapeutic alliance was immediately and irreparably shattered. I switched counselors, and made sure not to disclose anything too personal to her replacement.
The kind of harmful, stigma-driven treatment that I received as a methadone patient is not exceptional, but routine.
Earlier this year, Bethany Medley conducted several listening sessions with buprenorphine patients across New York State while working as the opioid program manager for the Harm Reduction Coalition (she’s now a consultant for Open Society Foundations).
“They would strip-search them completely naked, and do a cough-and-squat routine.”
She repeatedly heard participants say that the medication decreased opioid cravings, restored their energy and functionality, and provided stability to lives that had been ruled by the chaos of addiction. But she also heard about long wait-lists to care, patients who were kicked out when drug tests came back positive for benzodiazepines, and other stigmatizing policies—including, in a few shocking cases, strip searches.
“They would strip-search them completely naked, and do a cough-and-squat routine,” Medley recalls of testimony from several participants in different listening sessions. “They would look through their hair. If they’re a woman, they would lift their breasts.”
The supposed rationale of these highly invasive routines was to ensure the patients didn’t have anything on their person which they could use to cheat urine tests, which are widely used to check whether patients remain abstinent from non-prescribed drugs. Medley emphasizes that this practice was provider-specific; she heard it more than once, but it was far from common (she also reported these providers to the New York State Department of Health).
Surveillance of patient behavior, however, is standard practice. In fact, supervised urine testing and other behavioral controls are such a frequent occurrence in opioid pharmacotherapy programs that many patients—my past self included—assume that our providers don’t have a choice.
A Better Way Is Possible
In fact, that is not the case. Justine Waldman, medical director of the REACH Project, an equitable healthcare hub in Ithaca, New York, decided to step away from the culture of stigma and suspicion that dominates addiction care. Instead, she takes a harm reduction approach to buprenorphine treatment. She says the outcome has been “pretty amazing…we have an 89 percent [patient] retention rate, which is pretty much unheard of. In the more conventional settings you might get retention rates in the teens or 20s.”
Waldman says that building patient trust—the complete opposite of what I experienced while in methadone treatment—is the key to this. For example, they only require drug screening once a month, to ensure the patients are taking the buprenorphine—a measure Waldman feels is necessary to prevent the DEA from making claims that her clinic is allowing drug diversion. Positives for other drugs don’t affect patient care.
Waldman’s clinic also doesn’t mandate counseling services, though they are offered. So if someone can’t (or doesn’t want to) show up to an appointment with a therapist, they won’t face any medication sanctions—as is standard at many other clinics.
Humiliating Treatment Extends to Buprenorphine
I tapered off methadone in 2014. After a brief heroin relapse in 2016, I enrolled in a Seattle-based buprenorphine program. I found that buprenorphine gave me fewer unwanted side-effects than methadone, and I liked that I could pick up a weekly script instead of having to dose in the clinic every day.
I liked my providers, too. They were far less judgmental than the ones I encountered while on methadone. They even encouraged me; when one of my early articles made its way into my counselor’s addiction newsletter, he congratulated me and shared it with my peer support group. But surveillance and abstinence-only treatment models are so entrenched into our culture that they still infiltrated this relatively enlightened program.
In order to fill my weekly Suboxone script—which I could only do at the in-house pharmacy—I had to present a slip of paper signed by one of the counselors. To get that slip, I had to turn in a cup of pee.
It took several months before I was allowed to pee into that cup in private. Before then, I had to leave my stall door open while other women in the program peed next to me and a female counselor stalked between the stalls to make sure we weren’t tampering with the precious urine.
I never understood why my tests had to be supervised when I had entered the program voluntarily. Although I was never punished or kicked out for having a screen come back positive, I saw other patients—those who repeatedly relapsed—referred to inpatient programs or asked to leave.
I eventually had to fake abstinence as a treatment goal.
In order to attend the weekly peer-support group my provider offered, which I liked and found helpful, I had to agree to be abstinent from all non-prescribed substances. When I explained that I occasionally used cannabis (which is legal in Washington) to help manage especially intense cravings for heroin, my counselor told me I could still get my buprenorphine, but I couldn’t attend the group unless I pledged to work toward total abstinence.
I eventually had to fake abstinence as a treatment goal—and judging by the comments some of my peers made when the counselor was out of earshot, I wasn’t the only one.
“Most of our society,” says Justine Waldman, “is still stuck on this idea of abstinence and morality around opioid use disorder…they’re putting the fact that it’s not curable on the patient, which then becomes a moral issue—like it’s the patient’s moral failure that they’re relapsing on a disorder which is defined as a chronic relapsing disorder.”
As my experiences and those of countless others show, entrenched stigma poisons what would otherwise be highly effective treatment options. We have available medicines proven to help curb opioid overdose deaths and other complications. But they won’t work to their full potential until all providers recognize patients as thinking, feeling people.