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“shaming,” “stigmatizing,” and call-outs

Something is amiss in recovery advocacy.

Earlier this week, the Surgeon General’s office tweeted the following paraphrase of a speech given by the Surgeon General. (Later clarified to be incorrectly transcribed.)

Addiction is not a moral failing and that it affects “good” families. Nice message, right? We need more influencers to say the same kind of thing, right? Not so fast.

Recovery advocates corrected him for using the word “addict” (some corrections were pretty generous, others were more scolding) and he responded with the following:

People with addiction have called themselves addicts for decades and I’m not aware of any in-group vs out-group differences in use.

John Kelly (2010) was the first person I recall focusing on the associations people have with various words related to people with addiction. That work has been extended by White, Wakeman, Ashford, and Brown.

This work started with words that have innate negative valences, like “abuse” and “dirty.” It’s since extended into all sorts of other words, like addict, relapse, and involves calls for “person-first language” (which emerged in the late 1980s for other populations).

My memory of the emergence of all of this attention to language was at the level of advocacy with storytelling. As a strategic matter, recovery advocates were encouraged to tell their stories with certain language that was found to be less likely to arouse bias and stigma.

On the one hand, this made pragmatic sense to me for advocacy efforts. On the other hand, this also felt backwards. Abandoning objectively neutral words because some people (usually people who hold a negative bias toward people with addiction) have attached negative associations to them seems like a recipe for tail-chasing. What happens when the new words acquire a negative association? Do we just keep changing terms as people with biases learn them and extend their bias to the new terms? (Also, who does this put in control of our language?)

We’ve already seen this happen. Opioid Replacement Therapy and Opioid Substitution Therapy were replaced by Medication Assisted Treatment, which is now on the bad list. This creates significant descriptive problems for the sake of stigma reduction–an early recovery advocacy goal was to distinguish treatment from recovery. The new preferred term, Medication Assisted Recovery, conflates treatment and recovery, undercutting a key message of methadone patient advocacy efforts.

From Walter Ginter, medication-assisted recovery advocate:

The problem with the methadone community is we have too many people who think methadone is a magic bullet for that disease—that recovery involves nothing more than taking methadone.

This view is reinforced by people who, with the best of intentions, proclaim, “Methadone is recovery.” Methadone is not recovery. Recovery is recovery. Methadone is a pathway, a road, a tool. Recovery is a life and a particular way of living your life. Saying that methadone is recovery let’s people think that, “Hey, you go up to the counter there, and you drink a cup of medication, and that’s it. You’re in recovery.” And of course, that’s nonsense. Too many people in the methadone field learn that opiate dependence is a brain disorder, and they think that that’s all there is to it. But just like any other chronic medical condition, it has a behavioral component that involves how you live your life and the daily decisions you make.

White, W. (2009). Advocacy for medication-assisted recovery: An interview with Walter Ginter.

So . . . I get the pragmatic and strategic reasons to encourage advocates to adopt certain language but question the wisdom of it. However, this has evolved from a strategy to be used by recovery advocates to a requirement of anyone making public statements on the topic, with call-outs for shaming and being an agent of stigma.

I also don’t understand whose wishes this represents. How many people with addiction object to or feel harmed by the term addict? Hasn’t our message been that we’re resilient and resourceful people who only want the same opportunities as everyone else–the elimination of discriminatory barriers to treatment, employment, school, etc?

I’ve also previously expressed anxiety before about treatment and recovery being drawn into culture war battles. (And, culture wars have only heated up over the last several years.) Of course, this isn’t a culture war hotzone, but the enforcement and call-outs give it a similar feel–that there are sides, and one side is righteous and fighting for justice, while the other side are agents of stigma, injustice, and discrimination.

  • At what point do some of these efforts to reduce stigma alienate potential allies? IDK.
  • How well do recovery advocates represent to the beliefs, preferences, and priorities of people with addiction? IDK. However, it’s difficult for me to believe that these reactions to this tweet are representative of the views of significant numbers of people with addiction outside of advocacy circles.

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“the sale of opioids and the treatment of opioid addiction are ‘naturally linked'”

Of interest to me is their interest in entering the addiction treatment market.

ProPublica has a new report that review’s documents from a lawsuit filed against Purdue Pharma. The suit alleges that Purdue misled doctors and the public in ways that created the opioid crisis and blamed patients when they, predictably, developed opioid use disorders.

First, on how addiction treatment medications would fit into their business model:

In internal correspondence beginning in 2014, Purdue Pharma executives discussed how the sale of opioids and the treatment of opioid addiction are “naturally linked” and that the company should expand across “the pain and addiction spectrum,”

Second, on Purdue’s assessment of the market:

In September 2014, Purdue embarked on a secret project to join an industry that was booming thanks in part to OxyContin abuse: addiction treatment medication. Code-named Project Tango, it involved Purdue executives and staff as well as Dr. Kathe Sackler, a daughter of the company co-founder Mortimer Sackler and a defendant in the Massachusetts lawsuit. . . .

Internally, Purdue touted the growth of an industry that its aggressive marketing had done so much to foster.

“It is an attractive market,” the team working on the project wrote in a presentation. “Large unmet need for vulnerable, underserved and stigmatized patient population suffering from substance abuse, dependence and addiction.”

While OxyContin sales were declining, the internal team at Purdue touted the fact that the addiction treatment marketplace was expanding.

“Opioid addiction (other than heroin) has grown by ~20%” annually from 2000 to 2010, the company noted.

Questions

  • Is Purdue an outlier in the industry?
  • Or, does it represent business approaches that are common within the industry?
  • What lessons should we draw from Purdue’s use of doctors and research to support their claims?
  • What does this teach us about the relationship between pharma and government?
  • What false beliefs may be widely accepted in medicine and the media that represent a similar risk or poor care?

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Survival, stabilization, AND flourishing

A great tweet from Brandon Bergman:

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Free markets and opioids

This makes zero sense in an opioid crisis.

Who wants this? Are doctors and patients saying that the array opioid medications is incomplete?

What’s driving this? Public health? Ideology? Market forces?

Why are only 4 legislators speaking up?

You fill in the blanks.

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Should addiction treatment prefer abstinence?

apples_aint_oranges_by_tootieofruty

I was perusing past year’s articles in Alcoholism Treatment Quarterly and came across these two:

Achieving a 15% relapse rate

Article one, as the title suggests, examines Collegiate Recovery Programs (CRPs) and Physician Health Programs (PHPs), their outstanding outcomes, their common elements, and discusses their potential for application to other populations. The abstract introduces them this way [Emphasis mine. The reason will be obvious later.]:

The CRP and PHP models involve long-term, comprehensive components of care and ancillary services oriented toward highly transformative abstinence-based recovery.

The text of the article adds this:

Both models hold the maintenance of long-term abstinence as the general outcome of choice.

The closing discussion opens this way:

Is a 15% relapse rate attainable? Evidence would suggest that common factors among pockets of highly successful recovery may hold the ingredients needed to ensure low relapse rates for all addiction treatment. CRPs in particular provide an example of recovery supports that facilitate long-term recovery through addressing recovery and quality of life concerns concurrently, while the individual works to achieve greater social capital through education.

Expanding services and support to include broader depth and coverage of socioeconomic, ethnic, and other disparities that exist in the current system is of paramount importance if we are to see real societal change and test the efficacy of the PHP and CRP models. PHP clients, consisting of licensed professionals, obviously garner esteem, social credibility, and seem “worthy” of saving from addiction. In the same way, so do young people who have the wherewithal to engage in treatment and be successful in higher education.

“Motivational Interviewing cannot be used in its fidelity in abstinence-based treatment”

Article two makes the following argument:

A major underpinning of motivation interviewing is to“meet clients where they are at,”and tailor interventions to their specific stage of change. In abstinence-based programs, however, clients are immediately placed in the action stage of change, even skipping the preparation stage of change that is essential to maintain recovery. Furthermore, this choice is made for them, not only evidencing the inability to do MI, but also the lack of individualized treatment. Despite this disconnect, the abstinence-only approach is still used in many treatment facilities in the United States, with 72% of facilities providing 12 Step-based programs (Substance Abuse and Mental Health Services Administration [SAMHSA], 2017), which are abstinence based and noted as what someone must achieve it to attain recovery, according to the National Institute on Drug Abuse (NIDA; 2016). It is important to highlight, however, that our position is not that 12-Step programs are not useful or ineffective. Conversely, 12-Step programs have withstood the test of time and are a valuable resource for many. What we are suggesting is that 12-Step programs are not for every client and, therefore, should not be the core of treatment programming. Rather, we propose individualized treatment consistent with the underpinnings of MI, which includes assessments, treatment planning, and counseling sessions based on harm reduction, not abstinence. Although abstinence is an excellent goal for recovery, the culture of a treatment agency cannot determine the goals for clients, which obviously is the opposite of individualized treatment. The clients themselves must determine their own treatment goals. MI continues to gain popularity and was reportedly being used in 90% of treatment programs (SAMHSA, 2017). Based on these findings, it seems that many facilities are employing an abstinence-based philosophy while also attempting to use MI. The following sections discuss how MI cannot be used in its fidelity in abstinence- based programs, despite many claiming to do so.

I’d argue that the framing here leaves a lot to be desired.

First, they cite that 90% percent of programs report using MI, but argue that most cannot be implementing MI with fidelity to MI principles because 72% report “providing 12 step-based programs.” IF these are incompatible, who’s to say that the infidelity is on the MI side? Couldn’t it be on either side?

Second, it’s worth noting that the SAMHSA report does not report on programs “providing 12 step-based programs.” Rather, the report tells us how many programs report using “12 step facilitation” (TSF). That distinction is important. The difference between a program that reports “providing 12 step-based programs” and one whose toolbox includes TSF is significant. The former implies that the 12 steps are the foundation for the entire program and are used with 100% of patients. The latter implies that TSF may (or, may not) be used with patients. In fact, the report indicates that 47% of programs report using TSF “always or often.” The survey provides no definition or guidance for “often”, leaving it pretty subjective.

Why would the authors characterize the data in this way? IDK

Further, earlier in the article they present the Minnesota model as representative of contemporary treatment services. However, the same report indicates that residential/inpatient treatment represented only 9% of all admissions in the report, and who knows what portion of that 9% received services resembling the Minnesota model? Another confusing, rather than clarifying, representation.

Treatment goals

So, article two appears to say that services with a goal of abstinence cannot be faithful to MI.

Is abstinence an appropriate goal in treatment? And, how should providers determine what goal(s) they want to organize their programs around?

A lot of this comes down to the nature of the problem you are treating, whether the problem is a behavior or a disease.

If we’re treating addiction (whose hallmark is impaired control), then abstinence is the goal that’s going to provide quality of life. AND, as the first article demonstrates, we have approaches that can deliver high rates of success.

If you’re addressing a lower severity problem, harm reduction or moderation are often good ends to focus on. These kinds of users can probably reduce harm and maintain a good quality of life.

Imagine we were discussing some other illness with severe physical, psychological, social, familial, occupational, and spiritual consequences. Further, imagine there are treatments what deliver relapse rates as low as 15%. Imagine there are barriers to engagement and retention in these treatments, and you wanted to use MI to improve engagement. Would it be inappropriate to have services organized around the goal of engaging and supporting patients in these effective treatments?

Which goals should take priority? Engagement rates in these successful treatments, or fidelity to the MI model?

What would we think about a cancer treatment program that takes no position on treatment options, and prioritizes symptom reduction and patient choice over remission?

To me, the authors of the MI article seem to be focused on AOD use as a behavior rather than a symptom of a disease.

It’s possible that they are focused on lower severity SUDs, or they don’t believe addiction is a disease, or they don’t believe there are meaningful differences in good care for addiction and lower severity SUDs.

It’s worth noting that the word “disease” appears only once in the article, and only when describing the Minnesota model.

I have no quarrel with their high-fidelity version MI model for lower severity SUDs, and I have no problem with it as a model to engage high severity SUDs (addiction) into other effective treatment models. (See posts about gradualism and recovery-oriented harm reduction.)

What are we treating? What are we seeking recovery from?

I imagine, maybe incorrectly, that the authors and I disagree on addiction as a disease.

I believe that addiction is a brain disease, and I like the American Society of Addiction Medicine’s definition:

Addiction is a primary, chronic disease of brain reward, motivation, memory and related circuitry. Dysfunction in these circuits leads to characteristic biological, psychological, social and spiritual manifestations. This is reflected in an individual pathologically pursuing reward and/or relief by substance use and other behaviors.

Addiction is characterized by inability to consistently abstain, impairment in behavioral control, craving, diminished recognition of significant problems with one’s behaviors and interpersonal relationships, and a dysfunctional emotional response. Like other chronic diseases, addiction often involves cycles of relapse and remission. Without treatment or engagement in recovery activities, addiction is progressive and can result in disability or premature death.

Within the field, however, there once again seem to be growing doubts about addiction as a disease.

Some see it as an outdated metaphor or useful fiction, while others see it as an artifact of stigma, and others see it as a social ill. (It’s paywalled, but the NEJM just published an argument that addiction is a learning disorder and not a disease.)

Many of these models of understanding started outside of the field, but are being brought into the field, knowingly or unknowingly, by new professionals and advocates.

The problem is made worse by the DSM 5’s movement toward a continuum model which puts all AOD problems on one continuum/category. No longer are low severity problems and high severity problems categorized as different kinds of problems. Rather, they are now one kind of problem with different severities.

Fuzzy thinking?

I’m not an expert in MI, but I’m not sure I buy the argument that fidelity to MI demands that practitioners and programs be agnostic on abstinence as the ideal outcome for addiction. And, if it does, I wouldn’t want my loved one in a program that is neutral on the outcome associated with the highest quality of life.

So . . . what’s going on then?

Dirk Hanson offered a helpful observation a few years ago about the relationship between harm reduction advocacy and the disease model.

For harm reductionists, addiction is sometimes viewed as a learning disorder. This semantic construction seems to hold out the possibility of learning to drink or use drugs moderately after using them addictively. The fact that some non-alcoholics drink too much and ought to cut back, just as some recreational drug users need to ease up, is certainly a public health issue—but one that is distinct in almost every way from the issue of biochemical addiction. By concentrating on the fuzziest part of the spectrum, where problem drinking merges into alcoholism, we’ve introduced fuzzy thinking with regard to at least some of the existing addiction research base. And that doesn’t help anybody find common ground.

UPDATE: I suppose it comes down to whether one sees MI as a complete treatment.

No one would ever consider MI a treatment for cancer, but we might think of it as good practice to engage patients into treatment.

If you see your patient’s SUD as a behavioral issue, MI is the complete package.

If you see it as a disease, for which there are effective treatments, it’s a treatment engagement model.

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Policy change requires a good story

From Addiction:

. . . whether it is truly an accurate model of human addictive behaviour is more questionable. It is certainly true that numerous studies since Rat Park have shown the importance of environment in influencing human drug use, particularly in early years, but when considering socio-ecological models of health, drug use, drug choice, maintenance and development of problematic use or disorder, these are not simply a product of social environment (or lack thereof), but a complex interaction of individual risk (genetic and environmental) integrated within a larger social system, which are themselves complex and multileveled. However, this is not to construct a ‘straw man’ out of Rat Park – it has endured because advocating policy change requires a ‘good story’ and a simple narrative that has, or should have, at least some basis in evidence.

So . . . it’s a useful fiction (or partial-fiction). At what cost? This post touches on some of the issues.

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praying, rooting, empathy, support, compassion and respect

A friend shared this obituary with me today.

I don’t know anything about Maddie beyond what’s shared in her obituary, but it’s has to be the most beautifully written obituary I’ve ever seen.

Addiction afflicts beautiful, good people and it sounds like she was one of them.

It is impossible to capture a person in an obituary, and especially someone whose adult life was largely defined by drug addiction. To some, Maddie was just a junkie — when they saw her addiction, they stopped seeing her. And what a loss for them. Because Maddie was hilarious, and warm, and fearless, and resilient. She could and would talk to anyone, and when you were in her company you wanted to stay. In a system that seems to have hardened itself against addicts and is failing them every day, she befriended and delighted cops, social workers, public defenders and doctors, who advocated for and believed in her ’til the end. She was adored as a daughter, sister, niece, cousin, friend and mother, and being loved by Madelyn was a constantly astonishing gift.

Maddie loved her family and the world. But more than anyone else, she loved her son, Ayden, who was born in 2014. She transformed her life to mother him. Every afternoon in all kinds of weather, she would put him in a backpack and take him for a walk. She sang rather than spoke to him, filling his life with song. Like his mom, Ayden loves to swim; together they would spend hours in the lake or pool. And she so loved to snuggle him up, surrounding him with her love.

Thanks to Maddie’s family for sharing her story, she sounds like a lovely person.

Her family has a few important messages for readers.

If you yourself are struggling from addiction, know that every breath is a fresh start. Know that hundreds of thousands of families who have lost someone to this disease are praying and rooting for you. Know that we believe with all our hearts that you can and will make it. It is never too late.

If you are reading this with judgment, educate yourself about this disease, because that is what it is. It is not a choice or a weakness. And chances are very good that someone you know is struggling with it, and that person needs and deserves your empathy and support.

If you work in one of the many institutions through which addicts often pass — rehabs, hospitals, jails, courts — and treat them with the compassion and respect they deserve, thank you. If instead you see a junkie or thief or liar in front of you rather than a human being in need of help, consider a new profession.

I hope for peace and comfort for all of Maddie’s loved ones.

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