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Megan knew her baby girl was going through withdrawal, because everything about her was tight. This was a feeling she recognized. “That’s what it’s like,” she explains. “You’re not yourself.” She holds up her fists to demonstrate. The baby wouldn’t stop crying. She couldn’t get comfortable. For almost the entire nine months of her pregnancy, Megan had been on buprenorphine (brand name Suboxone) to treat opioid dependency. Stephanie Bobby, the nurse in charge of the Pregnancy Recovery Center (PRC), warned Megan that withdrawal was a possibility. The chances were one in three, although Megan never thought it would happen to her child.
She was scared and didn’t want it to be true, but Megan knew she had to do what was best for her baby. The nurses at Magee Women’s Hospital in Pittsburgh, where the PRC is housed in the basement, treated her baby for withdrawal, or neonatal abstinence syndrome (NAS), for 17 days.
Megan, who talks quickly and seems capable of getting anything done, stayed on buprenorphine for the next two years. When she and her husband — also treated with buprenorphine for opioid addiction — started talking about having a second child, the thought of putting another baby through withdrawal was unbearable. Megan wouldn’t even consider getting pregnant until she’d slowly weaned herself off the buprenorphine.
When Bobby found out Megan was completely off buprenorphine, she asked her to interview for the peer navigator position the PRC was creating with grant money. As a peer navigator, she’d guide PRC patients using her firsthand experience with the recovery process. She knew what they’d be going through. The PRC maintains that medication-assisted treatment (MAT), such as buprenorphine, can be a long-term solution for addiction, and the hospital does not propagate abstinence, yet they wouldn’t hire Megan if she was still taking the medication.
This is a confusing contradiction that raises the question: Does being “clean” require abstinence?
There are two simple and contradictory answers.
One, yes. Twelve-step programs such as Alcoholics Anonymous and Narcotics Anonymous work on the basis of complete abstinence. For example, no marijuana in AA. They aren’t going to kick you out (because according to one of their traditions, “the only requirement for membership is the desire to stop drinking [using]”), but if you tell people you’re smoking marijuana, someone is probably going to tell you that you aren’t “sober.”
Two, no. Medication-assisted treatment is a treatment, just like AA and NA are programs of treatment. Buprenorphine brings you back to normal and takes the edge off without getting you high, Bobby says. For Megan, it was her safety net. It’s just like insulin for diabetics, Bobby and others insist. Diet and exercise help, but you don’t tell people they need to eventually get rid of the insulin and manage their disease with diet and exercise alone.
Of course, it’s more complicated than that. Many people would object to my question — both the way it’s phrased and the sentiment behind it. “Abstinence” and “clean” could be considered problematic, because many don’t view buprenorphine (or methadone) as a drug. It’s a medication, just like insulin is a medication. But not everyone sees it that way. That’s why Meagan kept her treatment secret. No one except Megan’s husband knew that she was on buprenorphine. She didn’t want to be labeled a “junkie” or seen as doing something to harm her unborn child. Megan devised excuses for why her baby needed to stay in the hospital for 17 days and why she’s qualified for the job she has now.
Even the word “addict” has become an object of controversy. “Addiction is a disorder,” Karol Kaltenbach says. An emeritus professor at Thomas Jefferson University, she has worked extensively on substance abuse in pregnant women. But the term “‘addict” is pejorative, Kaltenbach says, and carries stigma that’s hard to shake.
In 2014, the editorial team of Substance Abuse Journal published a letter calling for more carefully considered language. They favor “people first” language — such as “person with substance abuse disorder” or “adolescent with an addiction” — that makes the addiction disorder one part of an identity rather than the entire thing and frames it as a health issue rather than a moral failing. People-first language originated with HIV/AIDS in the early 1980s, and many other communities, like those with disabilities or mental health disorders, followed suit (replacing “disabled person” with “person with disabilities,” for example). Sarah Danforth, the harm-reduction specialist at Prevention Point Pittsburgh, which provides needle exchange as well as other services, says that she prefers simply “drug user” because “it carries less stigma and is much more factual.”
This, though, doesn’t seem entirely accurate, or maybe it’s just too casual. People who smoke marijuana could be called “drug users,” like someone who drinks wine with dinner is a “drinker,” but we aren’t talking about casual opioid users—we’re talking about people in addiction. And addiction, defined by the National Institute on Drug Abuse, is a chronic “brain disease that is characterized by compulsive drug seeking and use, despite harmful consequences.” The term “drug user” doesn’t carry the connotation of a person in addiction.
“Person with substance use disorder” (and its synonyms) fits the situation better because it works to get rid of the stigma without trivializing the situation. (Note: The National Institute on Drug Abuse lists “substance abuse disorder” as a synonym for “addiction.”)
Several practitioners and researchers I spoke with took issue with my use of “addict” in the first story in this series. I wasn’t, as Substance Abuse Journal called for, particularly thoughtful about my language. I did, however, think about “addict” less as carrying stigma and more in the NA (or AA) sense — as a powerful self-identifier that claims ownership over the disorder and helps facilitate change. Using only terms like “person with substance abuse disorder” risks the loss of this power. Some experts seek compromise. William White, in “The Rhetoric of Recovery Advocacy: An Essay on the Power of Language” (2006), suggests that terms like “addict” and “alcoholic” be kept for “intragroup communication while being replaced in public communications with the phrase ‘person/people experiencing an alcohol/drug problem.’”
Clearly, language is powerful. White’s suggested compromise would allow those with addiction to retain the power of self-identification while simultaneously working to reduce stigma. One change that has already occurred in the addiction field is the switch from calling medication like buprenorphine and methadone “drug replacement therapy” to “medication-assisted therapy.” The idea that people are just replacing one substance for another is seen as extremely harmful to people attempting recovery, their relationships with individuals, and society as a whole. Although it doesn’t get rid of the stigma entirely (Megan still hasn’t told her family), the reframing helps.
So, let’s rephrase the question: Does being in recovery from addiction/substance abuse disorder require abstinence from medication-assisted treatment?
To answer this, we first need to define “recovery.” In 2012, the Substance Abuse and Mental Health Services Administration (a government agency within the U.S. Department of Health and Human Services) revised its definition of recovery from one that included “abstinence” to a “process of change through which individuals improve their health and wellness, live self-directed lives, and strive to reach their full potential.” A therapist (who wishes to remain anonymous) who practices at clinics that prescribe buprenorphine and who is a member of a 12-step program, says the change in people taking buprenorphine is often drastic. “They’re pursuing and reaching goals, examining and processing past traumas, have some joy and direction.” These are the same things he sees in people in 12-step programs — recovery.
Medication-assisted treatment is often referred to as “harm reduction.” Even though people on medication like buprenorphine and methadone aren’t completely abstinent, they are reducing harm — on themselves, their children, families, society, the government, etc. Even here, objections are to be found. Reducing harm is clearly good, but some people dislike the phrase “harm reduction” because it indicates a hierarchy. Abstinence is better than MAT, which is better than active addiction.
But is it? Medication-assisted treatment in combination with therapy has proven to reduce death rates by 50 percent and therefore has a higher recovery success rate. It also raises the bottom in some ways. In a 12-step program, a person is expected to identify as an addict or alcoholic. For MAT, a person need only recognize that substances cause problems in their life and want to do something about it.
By comparison, the success rates of 12-step programs are almost impossible to measure. For one thing, they’re anonymous. Also, what is considered success — is it doing the steps? Adhering to the principles? Helping others? Meeting attendance? Undoubtedly, abstinence is a taller order than what’s demanded by MAT. Yet many in MAT programs long for abstinence. A German study found that providers underestimate how many patients want to get off medication — and not one patient I talked to wanted to stay on medication indefinitely. Those arguing for long-term maintenance tend to be providers, doctors, and researchers.
I attempted to find statistics about patients who want to get off medication versus what their providers think they want, but the information does not exist. Gerald Cochran, a researcher within the School of Social Work and the Department of Psychiatry at the University of Pittsburgh, said empirical research into the matter is needed and lamented the dangers of basing too much on the highly variable personal experience of people recovering from addiction. In addition to empirical and community-based information, practice-based knowledge — like that from doctors, therapists, and social workers — comes into play. All are important, if not equal, and my attempt here is to put them into conversation.
So let’s assume the study and what I heard from people represent a truth — that the majority of people in recovery from opioid addiction do not want to stay on medication indefinitely. Why do they want to get off the medication? Is it because they think they’re supposed to, because of the stigma that being “on something” carries? Or is there something “extra” to be gained from abstinence?
Jess Williams, director of communication at the Institute for Research, Education, and Training in Addictions and a member of a 12-step program, says abstinence through 12-step programs seems counterintuitive. At first it feels restrictive, she says, but there’s an additional level of freedom that comes with abstinence. This is what Megan has found. Buprenorphine saved her life; it gave her confidence. With it, she says, you just know “you’re good.” But then she started hating the physical and mental and emotional dependence. Megan’s not a part of 12-step program. Her recovery is based on “getting away from everyone I used to be around — just my husband, my daughters, and me.” The community she’s built up at the PRC is also a vital help.
Clearly, recovery of any kind is good—infinitely better than active addiction. But is there a way to truly set MAT and abstinence on equal footing and get rid of the hierarchy? You might ask, what does it matter? Both allow people to recover, so both are great. To each his own. This seemingly sensible view is complicated by one fact: the near-universal agreement that people in recovery need a support system.
Cochran says the literature supports a “maintenance medication plus supportive therapy” solution. The Pregnancy Recovery Center offers this through a peer navigator in Megan and by requiring the women to attend group therapy with other PRC patients once a month. The PRC waiting room often seems more like a gathering of friends than a doctor’s office. This kind of support is also found in religious groups and in the huge, free network of 12-step programs. But many people on MAT don’t feel they have access to 12-step programs. If they do go, they have to lie about their medication or not participate by picking up sobriety chips (AA) or clean keytags (NA). Even sharing in meetings is problematic for them. As a result, they cannot truly be part of the group.
In general, 12-step groups are more accepting than that. While some members believe people shouldn’t be on any medication, including antidepressants and anti-anxiety medication, this is not true for most members. A pamphlet from Narcotics Anonymous World Services titled “In Times of Illness,” first published in 1992 and revised in 2010, states, “Just as we wouldn’t suggest that an insulin-dependent diabetic addict stop taking their insulin, we don’t tell mentally ill addicts to stop taking their prescribed medication. We leave medical issues up to doctors.”
Almost no one is going to tell you that you aren’t sober if you’re on an SSRI like they certainly would if you told them you were smoking marijuana.This situation is interesting to think about as medical marijuana becomes more common. For people in 12-step communities, it’s similar to the use of pain medication — sometimes necessary, but important to keep a close eye on. It’s common for people who take pain meds after surgery to eventually relapse when they start abusing them instead of using them only to manage the pain. It would be easy to lump medication-assisted treatment into this category of letting doctors decide, which this and other pamphlets largely do. But there is a difference between an SSRI and drugs that are pharmacologically similar to a person’s drug of choice — like buprenorphine and methadone are for opioid users.
Some in MAT recovery, like Megan, say they got a little energy from the buprenorphine, nothing more. But many in AA/NA told me that while being on buprenorphine is not the same as being on heroin, it’s not really the same as being sober, either. One member explained that the only reason she felt “sober” on buprenorphine was because she’d forgotten how it felt to be without anything in her system. Yet Megan, now completely abstinent, never had this same thought about the medication. It works differently for people.
Megan said that many of “her girls” at the PRC feel they have to lie to be a part of a 12-step group or their recovery time isn’t counted as legitimate. Most 12-step members I talked to had a harm-reduction view of medication-assisted treatment — it’s better than actively using, but it’s not the same as being “clean,” by which they mean abstinent.
A 2016 NA pamphlet on medication-assisted treatment states that because each group is autonomous, each decides whether people on MAT are encouraged to share or not. And if one group is not open, the pamphlet suggests, you might try others. But it also emphasizes “the fact that NA is a program of complete abstinence should not be misunderstood.” This, for NA as a whole, includes medication-assisted treatment. (Note: NA takes no opinion on any outside issues, including medication-assisted treatment, just what being “clean” means for its members.) Anyone is welcome to attend meetings and be a member because “the only requirement for membership is a desire to stop using,” but clean time is defined by abstinence.
Maia Szalavitz, a journalist who has written a great deal about addiction, said in a recent interview, “My argument is that we should separate the social-support aspect of 12-step groups from the spiritual element that some people find helpful.” But she’s asking to get rid of the basic “program” of 12-step programs. That same 2016 NA pamphlet on MAT states that NA “links together a recovery process [the 12 steps] and a peer-support network.” You could have one without the other, but it would no longer be a 12-step program.
If 12-step abstinence solutions are fundamentally at odds with medication-assisted treatment in terms of ultimate goals, is there still a way to set them as equal? Williams thinks so. She sees abstinence as offering something desirable and different from MAT, not above it. She points out that 12-step members often think of MAT as a “better than using” solution, but not as good as abstinence, while many MAT proponents think of their solution as superior to the 12-step approach — smarter and evidence-based.
“I feel connected to both groups,” Williams says, “and that’s a lonely place to be.” She doesn’t believe her path is the only one, or even the only one that would work for her. It’s just the one she took. Cochran talks about finding a “treatment environment that aligns with your values.” For example, a buprenorphine provider who is willing to keep you on long-term maintenance or wean you off when you’re ready, according to what you want. All recovery is good.
Between patients at the PRC, Megan sits in a room kept dimly lit for the women and their babies and talks about how badly her husband wants to get off buprenorphine. He’s hesitant, though, because he saw how difficult it was for her.
“The hardest thing I’ve ever done,” Megan says. While she’s happy to be off the medication, she doesn’t see her recovery as better than her husband’s because he’s still on it. It’s a lonely place, where abstinence and medication-assisted treatment are equal, but neither Megan nor Williams is completely alone.