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“Knowing or not knowing”: Living as harm reductionists in Twelve Step recovery

Published:January 13, 2023DOI:https://doi.org/10.1016/j.josat.2023.208954

      Highlights

      • Many, like the authors, have benefitted considerably from Twelve Step recovery.
      • However, others have suffered and died from stigma and policies within Twelve Step communities.
      • Twelve Step programs must further accept harm reduction as well as medication and other pathways to recovery.
      • While providers and Twelve Step members can make incremental change, large-scale cultural and structural change is necessary.

      Keywords

      “A moment of silence for the still sick and suffering, and those who will die tonight knowing or not knowing that recovery is possible.”
      These words are spoken at the close of many Twelve Step meetings around the world. As long-time meeting attendees, we have heard variations of these words innumerable times—from meetings held in church basements, in hospitals, and even at friends' funerals. For many in the rooms, including younger versions of ourselves, these words convey an air of reverence and respect—an homage to the seriousness of “this disease” and those who have been lost to it. Now, however, they evoke indignation.
      We are people who identify as in recovery from substance use disorder—two statistically rare cases who have found success in abstinence-based recovery for the better part of a decade. We “grew up” in Twelve Step recovery and find personal fulfillment in it. Throughout the years, participation in “the rooms” (as they are commonly referred to by meeting attendees) has unmistakably improved our lives: helping us find families, careers, hope, meaning, and spiritual direction. However, as harm reductionists, we struggle with watching far too many in our community die at the hands of systems pushing people with substance use disorder toward a one-size-fits all system of abstinence-based recovery. Often, this system suppresses the use of evidence-based interventions based on the premise that success in recovery requires complete abstinence from all “mood and mind-altering substances” (except caffiene and nicotine) and lifelong “spiritual growth.”
      We stopped using drugs in the 2010s, “getting sober” together in a small city in Michigan. While harm reduction and medication for opioid use disorder (MOUD) had at the time made minor inroads in our city, the legal and medical systems that ushered us into treatment were based heavily in the Twelve Step abstinence tradition. As part of our treatment programs, near-daily meeting attendance was required. Many who attended those early meetings with us have since left the Twelve Step community, resumed drug use, or died from overdose. At the time, everything we knew about the nature of addiction came from the Twelve Step community, and because the Steps worked for us, we wanted everyone to have what we had.
      In large part, privilege and luck kept us alive in that environment. We stopped using drugs before fentanyl and other contaminants took hold of our city's drug supply. We are white and college-educated, so we were treated relatively favorably by both the criminal legal system and the people in our predominately white Twelve Step rooms.
      The nearly monolithic whiteness of our city's Twelve Step rooms may have been a phenomenon of our particular city and – thankfully – not necessarily Twelve Step community as a whole.
      1The nearly monolithic whiteness of our city's Twelve Step rooms may have been a phenomenon of our particular city and – thankfully – not necessarily Twelve Step community as a whole.
      We had health insurance, so we had access to specialty treatment. We grew up in relatively healthy religious traditions, so we struggled less with the “Higher Power” concept than others. Most of all, we were among the few who maintained “long-term sobriety”, so our voices were privileged in advocacy efforts above those who used drugs or pursued alternative recovery paths. “These two did it,” so spread the message, “so it's possible for anyone.”
      However, we have since been confronted in our research with individuals who have taken many different paths to recovery, including pharmacotherapy, cannabis, and moderation. We have also met some who choose not to claim the “recovery” label at all: people who either find it unnecessary to pathologize their drug use or have had such negative experiences with Twelve Step recovery that they considered the label oppressive. Moreover, it has become impossible to ignore the large body of empirical support for harm reduction and MOUD over abstinence-only models (
      • Barnett M.L.
      • Barry C.
      • Beetham T.
      • Carnevale J.T.
      • Feinstein E.
      • Frank R.G.
      • de la Gueronniere G.
      • Haffajee R.L.
      • Kennedy-Hendricks A.
      • Humphreys K.
      • Magan G.
      • McLellan A.T.
      • Mitchell M.M.
      • Oster R.
      • Patrick S.W.
      • Richter L.
      • Samuels P.N.
      • Sherry T.B.
      • Stein B.D.
      • Vuolo L.
      Evidence Based Strategies for Abatement of Harms From the Opioid Epidemic.
      ;
      • Wakeman S.E.
      • Larochelle M.R.
      • Ameli O.
      • Chaisson C.E.
      • McPheeters J.T.
      • Crown W.H.
      • Azocar F.
      • Sanghavi D.M.
      Comparative effectiveness of different treatment pathways for opioid use disorder.
      ). We reflect on how years of Twelve Step socialization had led us to internalize that our dignity and worth were rooted in how many years had passed since our last drug use, or our performance of an ever-elusive “fit spiritual condition” for others in the rooms. Harm reduction, however, has the opposite message, and a critically important one: that our worth and dignity are inherent, unconditional, and worth fighting for. In our work—and in our recovery—that has made all the difference.
      Rooted in respect for the rights and autonomy of people who use drugs, the goal of harm reduction interventions is to improve overall health and quality of life rather than eliminate drug use entirely. These harm reduction principles, and the evidence that accompanies them, prompt deep reflection on our Twelve Step experience. On a micro level, we recall times that those in meetings who spoke about using MOUD (let alone harm reduction strategies) were often dismissed, if not openly reprimanded, by the vocal, influential minority who perpetuate stigma (
      • Andraka-Christou B.
      • Totaram R.
      • Randall-Kosich O.
      Stigmatization of medications for opioid use disorder in 12-step support groups and participant responses.
      ;
      • Krawczyk N.
      • Negron T.
      • Nieto M.
      • Agus D.
      • Fingerhood M.I.
      Overcoming medication stigma in peer recovery: A new paradigm.
      ). We mourn the overdose deaths that could have been prevented had people interested in MOUD not been kept out of our supportive community—or worse, kept in, but dissuaded from using medication. On a macro level, we reckon with the ways Twelve Step–rooted practices promote values that uphold systems of oppression and marginalize people who use drugs. From the Twelve Step perspective, greater emphasis is placed on one's “willingness” to work the steps than to the systemic factors that may preclude her from doing so. This one-size-fits-all approach often fails to account for the real barriers we witness among women, gender minorities, people of color, and people with disabilities: child care obligations, unreliable transportation, time spent working multiple sub-living wage jobs, and many others. Those of us who have stayed in the rooms struggle to shake the fear of inadequacy for not “putting recovery first”—failing to sponsor multiple people at a time, keep up our weekly “meeting count”, fulfill service commitments, and make continual progress on our own “step work”, all while tending to our mental health, caring for our families, and pursuing PhDs to keep our community alive.
      For us, recovery has been an unquestionable blessing. We've found not only freedom from problematic, life-threatening substance use, but also a new sense of purpose and usefulness to the world through acts of service. We have discovered a wellspring of hope and meaning through connection to a Higher Power and vulnerability with others. Under the right conditions, Twelve Step rooms can offer unparalleled levels of social support (
      • Toumbourou J.W.
      • Hamilton M.
      • U'ren A.
      • Stevens-Jones P.
      • Storey G.
      Narcotics anonymous participation and changes in substance use and social support.
      ). When Kim received an oxycodone prescription after her recent surgery, her Twelve Step network took her calls at all hours of the night, supporting her goals of responsible use and disposal. When Emily gave birth to her first child just weeks into the COVID-19 pandemic, members of her Twelve Step network delivered food and essentials, paid window visits, and offered emotional support. These are the blessings that keep us coming back. These positives, however, have come because the ideals promoted in Twelve Step groups, which are neither accessible nor desirable for everyone, happened to work for us. Keeping people alive, while respecting people's right to self-determination, their capacity, and their accessibility needs, is our main priority—the priority that underlies our research agenda and makes us harm reductionists.
      As individuals of Twelve Step communities, we must take responsibility for shifting the paradigm. To that end, we have adopted the following practices in our own Twelve Step recovery and urge others to do the same. First, we intentionally share positively about medication and harm reduction, both publicly in meetings and privately, to counter stigma and misinformation that is present in the rooms. Second, we attend and financially support meetings with free childcare that make recovery support more accessible for marginalized populations. Third, we sponsor people who manage complex medical and psychiatric needs with medication—including agonist MOUD—and offer full support of their approach. We celebrate others' anniversaries as they define them and remind them that their anniversary date is between them and their “Higher Power” only. Fourth, we help people taking medication or exploring harm reduction pathways navigate stigma by directing them to safe people and safe meetings. Finally, we chair meetings, and when someone shares a harmful message about harm reduction or MOUD, we remind the group that Twelve Step traditions state “we take no position on outside issues”. We direct people to places in the “Big Book” and other literature that encourage members to seek help from medical professionals.
      These individual-level changes are not enough. A check against the completely decentralized direct democracy of Twelve Step programs is necessary—a formal governance structure that protects the rights and needs of those not represented in cis-het white male majority. However, as Twelve Step members take pride in their highly decentralized governance structure as part of their “Twelve Traditions,” broad change is difficult—even where broad change is sorely needed. As a result, the most effective way to make change at present is at the group level. Groups can designate themselves as medication-friendly and note this status in their local meeting directories. Groups can also adopt a positive, welcoming message about medication and harm reduction to be read at the start of their meetings. Eventually, such a statement should be formally adopted by Twelve Step organizations as a whole, similar to the Alcoholics Anonymous Safety Card, which addresses a group's zero tolerance policy for violence in the context of meetings (
      Alcoholics Anonymous
      Safety card for A.A. groups.
      ). Districts can sponsor local workshops to help increase support for MOUD and harm reduction among their membership and promote an inclusive environment. On a broader scale, while changing the content of the main texts is unlikely, the back of the Alcoholics Anonymous “Big Book” and the Narcotics Anonymous “Basic Text” include personal stories that have evolved over the years. Stories of people who use MOUD, who traveled harm reduction pathways to the rooms, or who celebrate nontraditional recovery milestones should be added to future editions of these texts. Finally, a critical need exists for oversight of Twelve Step–oriented recovery residences and other programs that exclude people treated with MOUD (e.g.,
      • Majer J.M.
      • Beasley C.
      • Stecker E.
      • Bobak T.J.
      • Norris J.
      • Nguyen H.M.
      • Wiedbusch E.
      Oxford House residents’ attitudes toward medication assisted treatment use in fellow residents.
      ), including enforcement of Americans with Disabilities Act protections and penalties for violations (
      US Department of Justice
      Justice department issues guidance on protections for people with opioid use disorder under the Americans with Disabilities Act [Press release].
      ).
      We call on health care and social service providers to take seriously the trade-offs involved with recommending Twelve Step groups to people struggling with substance use disorder. These communities have been undoubtedly helpful—even life-changing—to those who either fit the Twelve Step mold or who have the fortitude to ignore popular pressure and follow their own path within “the rooms” (
      • Monico L.B.
      • Gryczynski J.
      • Mitchell S.G.
      • Schwartz R.P.
      • O'Grady K.E.
      • Jaffe J.H.
      Buprenorphine treatment and 12-step meeting attendance: Conflicts, compatibilities, and patient outcomes.
      ). To benefit patients beyond these narrow categories, providers can implement several suggestions. First, they can clearly communicate the risks of Twelve Step participation alongside the benefits when discussing treatment options, particularly with those who use MOUD or cannabis. Second, providers can encourage clients to interpret Twelve Step messages with an open-minded yet critical lens, ever reminding them that these messages may conflict with the messages of professionals. Third, as the Twelve Step approach does not work for many people, providers should remove clinical requirements for Twelve Step meeting attendance and suggest in-person and online alternatives (e.g., SMART Recovery). Finally, and most importantly, providers can advocate for harm-reduction interventions that prioritize the life and health of people who use drugs, regardless of how (or if) their patients describe themselves as “in recovery”.
      Moreover, we call on Twelve Step community members to remember the special trust conferred upon them by civil society, the medical community, and “the still sick and suffering addict” (a stigmatizing term whose removal is long overdue). Do not let this trust be misplaced. People who initially come to Twelve Step meetings are often desperate for solutions and willing to take as truth any suggestion from a charismatic layperson claiming to have a solution. In any given meeting, we are surrounded by no shortage of people for whom that special trust has saved lives; we do not have the same ready access to the lives it has ruined. It takes courage to interrogate the assumptions and status quo from which we benefit, let alone consistently push back against a culture that has been historically hostile to change. Advocacy is exhausting. This does not, however, make it any less imperative to push for drastic change. Creating a better Twelve Step culture—a culture that works for more than a narrowly defined few—is the ultimate manifestation of the Twelve Step's call to “carry the message.”
      Twelve Steppers may find empowerment in knowing that the overdose crisis is not rooted in the “addict” who dies “knowing or not knowing” that recovery is possible; rather, it is rooted in an unpredictable drug supply, in pervasive stigma toward people who use drugs, and lack of a wholehearted embrace of other treatment and harm-reduction modalities. Those in abstinence-based circles have shared goals with those in harm-reduction circles: we all want full lives, and we all want our loved ones to stop dying. While anecdotal and empirical evidence exists that the culture of the recovery community is shifting in favor of harm reduction (
      • Bergman B.G.
      • Ashford R.D.
      • Kelly J.F.
      Attitudes toward opioid use disorder medications: Results from a U.S. National study of individuals who resolved a substance use problem.
      ;
      • Hoffman L.A.
      • Vilsaint C.L.
      • Kelly J.F.
      Attitudes toward opioid use disorder pharmacotherapy among recovery community center attendees.
      ), a vocal minority of “old guard” Twelve Steppers have drawn an artificial line between the Twelve Step community and harm reductionists. We have seen this in our personal, professional, and academic lives, and we do not believe this line is inherently necessary. As members of the Twelve Step community, however, we take responsibility for it and have dedicated our personal and professional lives to erasing it. We refuse to let our community members die, knowing or not knowing that their deaths are preventable—knowing or not knowing that they are, unconditionally, worth saving.

      CRediT authorship contribution statement

      Kim Gannon: Conceptualization, Methodology, Writing – original draft, Writing – review & editing, Project administration. Emily Pasman: Investigation, Writing – review & editing.

      Declaration of competing interest

      The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

      Acknowledgement

      This article was made possible by the Agency for Healthcare Research and Quality T32 Trainee grant # GR103237.

      References

        • Alcoholics Anonymous
        Safety card for A.A. groups.
        • Andraka-Christou B.
        • Totaram R.
        • Randall-Kosich O.
        Stigmatization of medications for opioid use disorder in 12-step support groups and participant responses.
        Substance Abuse. 2022; 43: 415-424https://doi.org/10.1080/08897077.2021.1944957
        • Barnett M.L.
        • Barry C.
        • Beetham T.
        • Carnevale J.T.
        • Feinstein E.
        • Frank R.G.
        • de la Gueronniere G.
        • Haffajee R.L.
        • Kennedy-Hendricks A.
        • Humphreys K.
        • Magan G.
        • McLellan A.T.
        • Mitchell M.M.
        • Oster R.
        • Patrick S.W.
        • Richter L.
        • Samuels P.N.
        • Sherry T.B.
        • Stein B.D.
        • Vuolo L.
        Evidence Based Strategies for Abatement of Harms From the Opioid Epidemic.
        Legal Action Center, Washington, DC2020
        • Bergman B.G.
        • Ashford R.D.
        • Kelly J.F.
        Attitudes toward opioid use disorder medications: Results from a U.S. National study of individuals who resolved a substance use problem.
        Experimental and Clinical Psychopharmacology. 2020; 28: 449-461https://doi.org/10.1037/pha0000325
        • Hoffman L.A.
        • Vilsaint C.L.
        • Kelly J.F.
        Attitudes toward opioid use disorder pharmacotherapy among recovery community center attendees.
        Journal of Substance Abuse Treatment. 2021; 131108464https://doi.org/10.1016/j.jsat.2021.108464
        • Krawczyk N.
        • Negron T.
        • Nieto M.
        • Agus D.
        • Fingerhood M.I.
        Overcoming medication stigma in peer recovery: A new paradigm.
        Substance Abuse. 2018; 39: 404-409https://doi.org/10.1080/08897077.2018.1439798
        • Majer J.M.
        • Beasley C.
        • Stecker E.
        • Bobak T.J.
        • Norris J.
        • Nguyen H.M.
        • Wiedbusch E.
        Oxford House residents’ attitudes toward medication assisted treatment use in fellow residents.
        Community Mental Health Journal. 2018; : 1-7
        • Monico L.B.
        • Gryczynski J.
        • Mitchell S.G.
        • Schwartz R.P.
        • O'Grady K.E.
        • Jaffe J.H.
        Buprenorphine treatment and 12-step meeting attendance: Conflicts, compatibilities, and patient outcomes.
        Journal of Substance Abuse Treatment. 2015; 57: 89-95
        • Toumbourou J.W.
        • Hamilton M.
        • U'ren A.
        • Stevens-Jones P.
        • Storey G.
        Narcotics anonymous participation and changes in substance use and social support.
        Journal of Substance Abuse Treatment. 2002; 23: 61-66
        • US Department of Justice
        Justice department issues guidance on protections for people with opioid use disorder under the Americans with Disabilities Act [Press release].
        • Wakeman S.E.
        • Larochelle M.R.
        • Ameli O.
        • Chaisson C.E.
        • McPheeters J.T.
        • Crown W.H.
        • Azocar F.
        • Sanghavi D.M.
        Comparative effectiveness of different treatment pathways for opioid use disorder.
        JAMA Network Open. 2020; 3e1920622https://doi.org/10.1001/jamanetworkopen.2019.20622