In opioid use disorder treatment, there’s been a persistent (though not always acknowledged) tension between what’s good for public health and what individuals and their families want from treatment. I’ve written about it before. For public health, there’s plenty of evidence that MAT (medication assisted treatment) reduces illicit drug use, improves health and reduces crude mortality rates.

There can’t be many people in Scotland who wouldn’t agree with the importance of the prioritisation of saving lives and reducing physical and mental health harms as a first response to a life-threatening condition.

Titrating a person with an opioid use disorder onto replacement therapy was usually my first suggestion to them when I worked in community clinics. It would again be if I were to go back to that setting – though it wouldn’t be my only suggestion. In Scotland where we have a shameful level of drug-related deaths, MAT needs to be our first step for those with opioid use disorder in most cases. But then the question ought to be: ‘what’s next?’ because patient-important outcomes need to be addressed alongside public health priorities.

This week, in an online meeting of treatment providers, we heard stories of those who wanted to move on from MAT, but who were blocked in various ways from doing so. Their prescribers had refused to lower their dose or refer them to rehab. The reason that was most commonly given was ‘it’s too dangerous’. But we also heard more encouraging stories of personal choice helped by high level support, connection to mutual aid, flexible reductions in dose with close monitoring, early re-titration where necessary and referral on to residential rehab with good long-term outcomes.

I absolutely understand the risk element and the fears that exist of destabilisation and relapse. These are legitimate. But there are four questions worth thinking about here. 

  1. What do individuals and their families want? 
  2. Is it what’s on offer?
  3. Can people move on safely?
  4. If so, how do we mitigate risks?

Meeting people with opiate use disorder who were in long term abstinent recovery from illicit and prescribed drugs changed my mind about what was possible. I suppose I have met hundreds of such people over the years. That’s a game changer. I worry that some prescribers don’t spend enough time with people in recovery.

Although there are substantial benefits to MAT, there are also problems: non-engagement with those who would benefit and timely access for instance. Then there are other issues too: stigmatisation of those on methadone, poor retention in treatment and how MAT fits in with the management of problem polysubstance use, including alcohol.

Some of these challenges are related to treatment delivery and can be improved. Indeed, there is much work going on in Scotland at the moment to address some of these through the MAT standards. MAT is a vital weapon in the battle against drug deaths – in that sense a major public health intervention – however, in community clinics we deal not with the public en masse, but with individuals whose own goals will sometimes clash with the public health imperative. 

So, does MAT help patients achieve their wider goals – those person-important outcomes? We don’t really know is the short answer. A systematic review published in 2017[1], found that health related quality of life measures are rarely used as outcomes in MAT research. When looked at from a recovery perspective, we have more evidence on the negatives that go than on the positives that arrive. There are studies showing improved quality of life, but we need more on whether people reach their goals and get improvements in the things that matter to them.

A small in-depth Norwegian study[2] involving 7 women and 18 men on MAT found evidence of them being ‘stuck in limbo’ in terms of not moving on despite national guidance that the patient’s own goals ‘should be the basis of treatment’. These drug users were still engaged in illicit drug scenes. The researchers found four themes:

  1. Loss of hope
  2. Trapped in MAT
  3. Substitution treatment is not enough
  4. Stigmatisation of identity

Some of this will chime with service users here too, though I see such themes as systemic issues rather than a problem with MAT per se. We can address some of this through the introduction of hope at every encounter – from safe injecting spaces to residential rehab, and if we can get recovery-oriented systems of care operational, have nobody ‘trapped’ anywhere in our services.

Another Norwegian study[3] found that health-related quality of life for those on long term opiate replacement therapy was significantly lower than the general population – indeed lower than that of those with severe mental and physical health conditions.

Recognising these issues, a major review[4] has been announced in the British Medical Journal, which moves away from public health-important outcomes to look at patient-important outcomes. The researchers state:

“Recent guidelines indicate there is little consistent evidence to evaluate the effectiveness of MATs [Medication assisted treatments]. Reviews evaluating MAT effectiveness have found great variability in outcomes between studies, making it difficult to establish a real treatment effect. 

Each study measures a different set of treatment outcomes that define success in arbitrary or convenient terms. This is a substantial limitation in addiction research that must be overcome to reach a consensus on which treatment outcome domains should be the goals, how those outcome domains should be measured and what works for opioid addiction management. 

If the outcome for such trials was reduced criminal activity, reduced incidence of infectious diseases, reduced homelessness or other social advantage, the intervention may be helpful for only certain groups of patients.”

The editor of the Journal Drug and Alcohol Dependence, Eric Strain, takes up the same theme this month in an editorial[5]. My co-contributor, Jason has covered this in more depth recently. While making the point that reducing loss is undoubtedly a ‘worthy goal’, Strain talks about the risk of stopping there. He says:

Efforts to address this have  resulted in  a  focus on decreasing overdose deaths as an endpoint

He makes the point that setting a numerical goal for death reduction means it can be celebrated when achieved. He says, ‘it is worrisome and problematic to think that decreasing the percentage of opioid overdose deaths will solve the problem of opioid use. For patients and their families, it will not.’ He goes on to say:

Not overdosing is an insufficient endpoint for treatment or for societal and medical interventions – it’s a starting point. 

Strain talks about the importance of finding meaning and purpose and allowing people to ‘flourish’. He points out that researchers and healthcare providers see these as critically important in their own lives, yet we don’t seem to prioritise these for patients or in research.

I’m glad that quality of life is being taken more seriously by researchers. Recovery research has focussed on this for years, and rightly so, because quality of life is important to the people we are working with and to their families. There are other important things to be explored. We need research to understand what works best to reduce risks to those seeking abstinence, to explore what part our treatment systems play in facilitating and blocking people moving on, and to understand long term outcomes in those choosing abstinence/recovery pathways (where such pathways exist).

There will be many people who are satisfied with where they are in terms of treatment, including those on long-term MAT. If they have been given meaningful choice in our treatment system and chosen MAT, then that’s cause for celebration. I’m thinking of those who have different goals and how we might improve what’s on offer to help them.

The question ‘what’s next?’ is a crucial one if we are to accept that reducing drug deaths is a necessary start but not an end in itself. We have to navigate the dual goals of reducing drug deaths and helping people flourish. These needn’t be in opposition; indeed, many will say that harm reduction interventions saved their lives and allowed them to recover.

I’ll leave you with two other questions. Is that question ‘what’s next?’ being asked enough, and are there safe and supported routes available to help people reach their own important outcomes?

Continue the discussion on Twitter @DocDavidM

[1] Bray JW, Aden B, Eggman AA, et al. Quality of life as an outcome of opioid use disorder treatment: A systematic review. J Subst Abuse Treat. 2017;76:88-93. doi:10.1016/j.jsat.2017.01.019

[2] Grønnestad TE, Sagvaag H. Stuck in limbo: illicit drug users’ experiences with opioid maintenance treatment and the relation to recovery. Int J Qual Stud Health Well-being. 2016;11:31992. Published 2016 Oct 19. doi:10.3402/qhw.v11.31992

[3] Aas, C.F., Vold, J.H., Skurtveit, S. et al. Health-related quality of life of long-term patients receiving opioid agonist therapy: a nested prospective cohort study in Norway. Subst Abuse Treat Prev Policy 15, 68 (2020). https://doi.org/10.1186/s13011-020-00309-y

[4] Sanger N, Shahid H, Dennis BB, et al, Identifying patient-important outcomes in medication-assisted treatment for opioid use disorder patients: a systematic review protocol BMJ Open 2018;8:e025059. doi: 10.1136/bmjopen-2018-025059

[5] Eric C. Strain, Meaning and purpose in the context of opioid overdose deaths, Drug and Alcohol Dependence, Volume 219, 2021,

This was originally published in a 2019 National Association of Social Workers’ Alcohol, Tobacco and other Drug specialty section newsletter.

The most striking thing about substance abuse treatment is the mismatch between the duration of treatment and the duration of the illness.

—Robert DuPont, MD 1DuPont R. (March, 2018) Interview with Brian Coon. Interview presented at the NC Recovery Alliance Summit, Durham, NC.

The opioid crisis has shined a spotlight on the U.S. addiction treatment system. Much of the coverage has focused on profiteering, the failure of states to reform their systems, the failure of programs to adopt evidence-based practices, and exploitation of patients. Many of these criticisms are well-deserved and have the potential to create opportunities to discuss how the addiction treatment system should be designed. Social workers need to involve themselves in this discussion to assure that the needs of vulnerable patients are considered and our values and priorities are represented.

Several unique qualities of the opioid crisis (its lethality, its frequent iatrogenic origins, and the availability of pharmacological treatments) have raised important questions about treatment-as-usual representing a one-size-fits-all approach. It could be argued that the responses to these questions have been debates about which one-size-fits-all approach—inpatient, agonist, partial agonist, antagonist, harm reduction—should prevail. Social work’s emphasis on families, communities, social functioning and overall well-being provides a unique perspective. Where others are interested in reducing social costs, reducing medical costs, reducing symptoms, reducing crime and reducing disease transmission, we’re interested in all of those outcomes and maximizing the wellness of individuals, families and communities.

If we focus on maximizing individual wellness, a few models stand out. Professional monitoring programs for impaired pilots, lawyers and health professionals have very good outcomes and focus not just on the amelioration of symptoms, but also outcomes like returning to work. The most well-researched of these programs are physician health programs (PHPs). A large and long study of 904 physicians in 16 states reported the following 5-year outcomes 2DuPont RL, McLellan AT, White WL, Merlo LJ, Gold MS. (2009), Setting the standard for recovery: Physicians’ Health Programs. J Subst Abuse Treat. 36(2):159-71. Doi: 10.1016/j.jsat.2008.01.04.:

It’s important to note that this study reported on 5 year outcomes, monitored alcohol and other drug use, and reported on an important quality of life measure (return to employment). This represents a rare level of rigor.

What does this program consist of? The study proposed the following elements as the essential ingredients of the model:

  1. Contingency management
  2. Frequent drug testing
  3. Active linkage to abstinence-oriented mutual aid groups
  4. Active management of relapse with intensified treatment and monitoring
  5. Continuing care that lasts 5 years
  6. Focus on lifelong recovery

Most readers will wonder whether these program outcomes are relevant to the general population. Objections typically fall into three categories.

The most common objections tend to focus on the doctors as a cohort with unusually high levels of recovery capital (the quantity and quality of internal and external resources that one can bring to bear to initiate and sustain recovery from addiction) 3Laudet AB, White WL. (2008). Recovery capital as prospective predictor of sustained recovery, life satisfaction, and stress among former poly-substance users. Subst Use Misuse. 43:27–54.. To be sure, there may be ways in which health professionals are unique in terms of recovery capital. However, they also face a unique set of barriers when initiating recovery. Another PHP study 4DuPont RL, McLellan AT, Carr G, Gendel M, Skipper GE. (2009), How are addicted physicians treated? A national survey of Physician Health Programs. J Subst Abuse Treat. 37(1):1-7. found high rates of opioid addiction (35%), high rates of combined alcohol and drug problems (31%) and high rates of psychiatric problems (48%), and 74% were not self-referred. Further, health professionals have easy access to drugs and often develop tolerance levels that eclipse those of street addicts.

Two pieces of folk wisdom may also be relevant. First, it’s often said that doctors make the worst patients. Second, a common joke in treatment and recovery circles is, “I’ve never met anyone too simple-minded for recovery, but I’ve met plenty of people who were too smart.”

So, doctors may have unique advantages, but they also have unique barriers. If there is a difference, is there reason to believe it’s stark enough that it wouldn’t work for other addicts?

A second group of objections center around the cost of this model. While the costs of this model will not be insignificant, it could be implemented in a manner that keeps it affordable in the context of health care spending. At current public funding rates in Michigan, the following services could be provided over 5 years for under $45,000: 120 days of residential treatment, 364 drug screens, 100 outpatient group sessions, 100 outpatient individual sessions, and 5 years of recovery support and monitoring from a Recovery Support Specialist.

In the context of American healthcare spending, this does not seem to be an unsustainable burden and, in fact, is likely to be a very wise investment in pure financial terms. According to The Healthcare Bluebook, it’s similar in cost as inserting a stent–just the procedure, excluding continuing care, medications, etc. 1,000,000 stents are implanted in the US every year.

The third set of objections focus on use of coercion. Doctors often participate in these programs under threat of having their medical license suspended or revoked. Many argue that coercion is a critical element in the success of the model and that transferring the model to other patients without the element of coercion would not get us similar outcomes because coercion is such an important ingredient. This is a compelling argument. Being a doctor is more than just a high paying job—it’s a personal identity as well as professional, and it provides a powerful source of meaning and purpose. The risk of losing their license is a very big stick, and the opportunity to return to practice is a very big carrot.

However, addiction professionals routinely encounter patients who are at risk of losing their children or their freedom. How can we be so sure that threats to their professional lives provide a unique source of motivation that cannot be created for other populations? Do we really believe that the an identity like mother or father is less powerful?

This raises two questions. First, how do we build similar systems to initiate and support recovery around these other patients? Second, how can we voluntarily engage patients into these systems of care?

Fortunately, William White has developed a model of care in response to these questions. His model of Recovery Management is recovery-oriented (rather than pathology-oriented) and is based on the assumption that addiction is a chronic illness that requires management over the lifespan. Recovery Management focuses on the following elements 5White, W. (2005). Recovery management: What if we really believed that addiction was a chronic disorder GLATTC Bulletin, September, 1-8. Chicago, IL: Great Lakes Addiction Technology Transfer Center.:

  1. Models of engagement that focus on lowering thresholds, outreach and pre-treatment support services, viewing motivation as an outcome of the service relationship rather than a precondition for service initiation.
  2. Models of assessment that are focused on the whole life of the recovering person, recovery capital, and continue over the span of the service relationship.
  3. Service models that recognize recovery initiation and recovery maintenance are different processes requiring different forms of support, including sustained monitoring, stage appropriate recovery education and coaching, assertive linkage to local communities of recovery, and, when needed, early reintervention.
  4. A shift in the locus of care from within the walls of the agency to the natural environment of the client. 
  5. Viewing the client as the expert on their lives, goals, and, eventually, the long-term management of their recovery rather than seeing them as the biggest barrier to their own recovery.
  6. A shift toward service relationships as partners and allies and away from relationships that are time-limited and hierarchical.
  7. Models of evaluation that focus on measuring the long-term effects of multiple service interventions rather than the short-term effects of single interventions.

An important benefit of this model is that it side-steps arguments over one-size-fits-all approaches by setting our focus on providing long-term recovery management.

Many states and systems of care are attempting to deploy this model, however the implementation is often incomplete, inconsistent, too focused on individual interventions, and lack comprehension of the larger vision of the model.

Social workers are the ideal addiction professionals to execute this model. Our belief in social justice requires us to challenge the disparities in care between these culturally empowered professionals and the rest of the population. Our person-in-environment perspective and strength-based approach make us the right professionals to perform assessments and deliver services within the Recovery Management model. What group of professionals is as capable of organizing communities to support recovery and reduce stigma?

As the country struggles with the consequences of the opioid crisis and temptation builds to lower the bar by narrowing our focus to the amelioration of those consequences, social workers possess the skills, values, and conceptual frameworks to construct systems of care that deliver recovery and social justice.

References

If the title does not repulse you, I think there may be something wrong with you. That is the point of this post. The headline is what a medical professional told former Pennsylvania Secretary of the Department of Drug & Alcohol Programs Gary Tennis when he asked the person what should be done with people like me. I know he was told this because he related this story several times when talking about stigma at public events. I am grateful to him for acknowledging how horrific these attitudes are. Acknowledging the truth is the first step to changing it.

As a person who would be so eliminated, it actually hurts my heart to hear that medical professional feel that way about us. I have been thinking about this lately because of yet more efforts here in Pennsylvania to reduce SUD privacy rights under the argument that to do so would improve care. Giving more access of information to people who despise us will not help us. Maybe we should do something about the horrible attitudes within our medical care system before we open up people like me to more discrimination.

If you think my example is an isolated situation, consider this NYT article “Injecting Drugs Can Ruin a Heart. How Many Second Chances Should a User Get?” published on April 29, 2018. The section that has long haunted me is where a physicians describes the “care” to a young man in Tennessee is related:

A little over a year ago, he replaced a heart valve in a 25-year-old man who had injected drugs, only to see him return a few months later. Now two valves, including the new one, were badly infected, and his urine tested positive for illicit drugs. Dr. Pollard declined to operate a second time, and the patient died at a hospice. “It was one of the hardest things I’ve ever had to do,” he said.

The young man was left to die because he did not respond to treatment immediately. They withheld treatment and let him die. That is what I see when I read this. It is so very telling about the brazen nature of the discrimination against us. They don’t even bother hiding it.

I want to be the first to acknowledge that some really great people in our medical care systems are working very hard to change this. I have friends who will read this, and I know they get up every day and work from within the medical care system to improve the perception and show we do get better, and we are actually human. If you are someone who is so engaged, I salute you. You are part of the solution. Unfortunately, I see little evidence that the prevailing negative attitude about us has changed nearly as much as it needs to.

How prevalent are these underlying negative biases against us?  Here is a USA today article about an Ohio politician who tried to pass a law to limit overdose reversals and simply let people die in the street while EMTs stood by with Narcan in hand. If this is what people are saying out loud, what do you think is said when they think no one is listening, or how they act when they think no one is watching?

Still thinking such bias against us is rare? A physician in Oregon wrote this piece about his patients avoiding hospitals because they are drug users and they are afraid that their drug use will mark them as a different class of patient, that their treatment will be worse, and they will suffer. He writes that they are correct. He sees it too. As he notes “It announces itself with, “Well, you did this to yourself.” As if patients with tobacco-ravaged lungs, or with complications from diabetes, or clogged arteries, or broken legs from driving too fast or skiing off trail didn’t also contribute to their own hospitalizations.” This discrimination happens all across America, every single day.

My friend and colleague, Dr. Sean Fogler wrote this piece in STAT News about how stigma is weaponized in our medical care systems. As an openly recovering physician, he would see such things more easily than others. Another recovering physician friend once told me that persons with substance use disorders in their hospital are known as GOMERs (Get Out of My ER). I know more than a few medical professionals in recovery who will not let anyone in their hospitals know they are in recovery because the attitudes about us are abysmal. These are the people we are going to give greater access to our sensitive addiction histories. God help us.

I have experienced such discrimination in medical settings more than a few times. Taking people into the ER for help at 2 AM and being treated like vermin even as the person accompanying them has happened to me more times than I can count. One time I told a dentist treating me that I was in recovery as he was handing me 30 days’ worth of opioids for a dental procedure when an NSAID was a better choice. I told him I did not want an opioid; I took Advil instead. A few days later, I experienced some pain and swelling and set up an appointment to see him. I was worried about infection and went into see him to get ahead of it with an antibiotic in case it was infected. The gentle hand of the professional who treated me the week before was gone. He jammed his hands into my mouth causing more pain, he told me I was fine and informed me I would get no drugs from him. I walked out disgusted and ashamed. 30 years in continuous recovery at the time and I walked out feeling dirty. It still hurts my soul.

The Recovery Research Institute Center for Addiction Medicine and Harvard Medical School conducted this study, “Perceived discrimination in addiction recovery: Assessing the prevalence, nature, and correlates using a novel measure in a U.S. National sample.” It estimates that around 15.2% of people in recovery found it hard to get health insurance because they were in recovery, 14.7% felt like they received inadequate medical treatment, 48.8% reported people assumed they would relapse and 38% held to a higher standard than other people. The mark of stigma is on us.

Thinking about all the lobbying that medical institutions and insurance companies do to get ever more detailed access to our substance use records “so they can better help us.” They usually lobby to align it with HIPAA which allows greater ease for disclosure of illegal drug use to law enforcement than under the SUD privacy rules. Some physicians and nurses are bound to part of the half of the US population mentioned in the study above that assume I relapse, or I am lying to them, and they provide me and people like me substandard treatment. Please realize why many of us do not want the scarlet letter “A” for drug ADDICT written across the front of our medical record by reading this post. Maybe read it a few times.

We keep making it easier to expand access to highly sensitive information. Every case I worked on as a clinician contained detailed drug use history, including family drug use history. I imagine that soon we will see those records show up in criminal cases and divorce proceedings. While recent changes to our privacy rights in the CARES Act now contains extra protections against discrimination, the amendments also permits records to be disclosed pursuant to court order or patient consent for uses in criminal, civil and administrative proceedings. Up until 2020, there was a good reason people could not sign away their rights for their records to be used against them. Now they can. Inevitably, we will see people who are coerced or not properly informed of the gravity of signing away these critical protections.

How exactly do we improve care if medical professionals have such negative views about us and nothing is done to hold them accountable? We should talk about why we are okay with allowing a 25-year-old to die in hospice instead of providing a medical procedure. Do we let diabetics die because they do not follow their diet? Why is it ok refuse care and send a 25-year-old with a substance use disorder to a hospice to die?  It happens fairly regularly simply because we are seen as less than human. Why is there only concern expressed for us when it is associated with reducing our rights to privacy – which serves to protect us against such discrimination is proposed solution instead of fixing the attitudes and aggressively prosecuting discrimination?  

These attitudes are pervasive. It is the proverbial elephant in the room that nobody wants to deal with because these institutions are so powerful, and we are seen as less than human. Let us clean up our medical institutions as step one to reducing stigma. Where are our anti-discrimination laws and what teeth do they have? We need to have a zero-tolerance policies on discriminatory treatment of persons with a substance use disorder written into every hospital policy. They should include strong administrative sanctions for all staff who discriminate against us and everyone who witnesses it and fails to report it. Put such policies in place in every medical institution in the country. Then enforce them.

One in three families experience a substance use disorder. “Those people” are “our people.” We must prosecute discrimination and include compensatory and punitive damages in our laws. We must hold medical care institutions and medical professionals accountable. We must change behavior. We must stop accepting the unacceptable.

Racism is rampant in the US with effects that are pervasive and wide-ranging, including in the areas of science and health. In 2020, in response to events like the murder of George Floyd that highlighted once again how far our society is from real racial equity, leaders from across the country stepped forward to provide their commitments to making a difference, NIH leadership included. Francis Collins and Larry Tabak announced the NIH-wide UNITE Initiative to end structural racism in biomedical sciences, and in parallel NIDA established the Racial Equity Initiative (REI) to work toward eliminating racism and racial bias from (1) the NIDA workplace, (2) the larger workforce of scientists and staff supported by our Institute, and (3) the portfolio of addiction-related research NIDA funds.

Since establishing the REI, workgroups composed of NIDA staff volunteers have held numerous listening sessions to solicit input from our staff on the three goals of the initiative, and we held a scientific meeting in February 2021 on enhancing research in health disparities associated with substance use and addiction. The meeting was open to the public and featured leaders in the addiction research community with expertise in social determinants of health. The result of these and other activities is a draft Racial Equity Initiative Action Plan to focus our efforts in eliminating racism and racial bias over the coming years.

The draft Action Plan consists of Goals and Objectives designed to further the missions of the three workgroups: Workplace, Workforce, and Research Gaps and Opportunities. Before finalizing and implementing the Action Plan, we are now seeking input from the public in all three areas, including input from the scientific community, healthcare professionals, and people who use drugs or have addiction, and their families.

The aim of the NIDA REI Workplace Workgroup is to create opportunities for safe and regular communication among staff and between staff and management about concerns related to racial bias and harassment and take measures to promote racial equity, inclusion, and diversity—both in NIDA’s headquarters in Bethesda, Md., and at its Intramural Research Program in Baltimore. Special focus will be given to providing ongoing opportunities for sharing and obtaining feedback from NIDA staff about the workplace climate and implementing measures to keep that climate free from harassment and discrimination.

The NIDA REI Scientific Workforce Diversity Workgroup aims to increase racial and ethnic diversity, equity, and inclusivity in the wider community of addiction researchers. It requires identifying disparities and systemic barriers to workforce diversity, increasing engagement among students and those scientists, and taking measures to ensure that groups historically underrepresented in addiction science are fostered throughout their education, incentivized to pursue an addiction science career, and retained in that career path. The latter goal may entail continuing to implement policy changes in grantmaking with the goal of recruiting and retaining a more diverse community of scientists studying addiction. Objectives include addressing factors such as racial imbalance on review committees that perpetuate the bias in favor of white grant applicants and holding principal investigators and their institutions accountable for diversity and inclusivity. 

Inevitably, lack of diversity and imbalances in the research community are self-perpetuating, contributing to blind spots in the kinds of topics that receive the most attention. The aim of the NIDA REI Research Gaps and Opportunities Workgroup is to increase support for research on social determinants of drug use, addiction, and related conditions and the ways these contribute to racial health disparities in our society. Although social determinants are already a research priority for NIDA, a key focus of this Initiative will be to identify topics (such as stigma) that have not been given adequate priority in the past and to test and implement sustainable remediation strategies to address them. Developing tools to measure social determinants and ensuring the inclusion of underrepresented minorities in clinical trials are among the many objectives of this part of the Action Plan.

By sharing this draft plan with the research community, stakeholders, and others, we ask for input and perspectives that can inform our work. We are listening, and we are particularly interested in listening to those who have been directly or indirectly impacted by structural racism or racial bias in NIDA practices or research. Sharing your thoughts and views will help ensure that the plan is comprehensive, realistic, and meets the needs of those most affected by racial discrimination and unconscious bias.

The draft Action Plan can be read here and instructions on how to submit feedback can be found in the Request for Information (RFI) (NOT-DA-22-052). Your input will make our field more diverse and improve the important science that we do.

This essay was also published by Health Affairs on January 3, 2022.

Last year saw drug overdose deaths in the U.S. surpass an unthinkable milestone: 100,000 deaths in a year. This is the highest number of drug overdoses in our country’s history, and the numbers are climbing every month.

There is an urgent need for a nationwide, coordinated response that a tragedy of this magnitude demands. Recent data from 2020 shows that only 13 percent of people with drug use disorders receive any treatment. Only 11 percent of people with opioid use disorder receive one of the three safe and effective medications that could help them quit and stay in recovery.

The magnitude of this crisis demands out-of-the-box thinking and willingness to jettison old, unhelpful, and unsupported assumptions about what treatment and recovery need to look like. Among them is the traditional view that abstinence is the sole aim and only valid outcome of addiction treatment.

While not using any drugs or alcohol poses the fewest health risks and is often necessary for sustained recovery, different people may need different options. Temporary returns to use after periods of abstinence are part of many recovery journeys, and it shouldn’t be ruled out that some substance use or ongoing use of other substances even during treatment and recovery might be a way forward for some subset of individuals.

Reduced number of heavy drinking days is already recognized as a meaningful clinical outcome in research and medication development for alcohol addiction. Clinical endpoints other than abstinence, such as reduced use, are now being considered in medication trials for drug use disorders. This could facilitate the approval of a wider range of medications to treat addiction, as well as open the door to medications that address symptoms associated with it, such as sleep disorders and anxiety. The existing medications methadone, buprenorphine, and naltrexone have proven to be effective at reducing relapse risk and improving other outcomes in patients with opioid use disorder, but more options could benefit more patients. And medications to treat other drug use disorders are needed.

Temporary returns to drug use are so common and expected during treatment and recovery that addiction is described as a chronic relapsing condition, like some autoimmune diseases. Yet these setbacks may still be regarded by family, friends, communities, and even physicians as failures, resetting the clock of recovery to zero. Patients in some drug addiction treatment programs are even expelled if they produce positive urine samples.

Healthcare and society must move beyond this dichotomous, moralistic view of drug use and abstinence and the judgmental attitudes and practices that go with it.

There are still many unknowns about the different trajectories that recovery may take, but stereotypes should not guide us in the absence of knowledge. Research in the field of nicotine addiction shows that a person’s first cigarette after a period of abstinence raises the risk of returning to their pre-treatment use pattern but does not always have that outcome. Research on the consequences of returning to opioid, stimulant, or cannabis use after a period of non-use is still needed, but there is little evidence to support the assumption—reinforced in movies and TV shows—that a single return to drug use following on a one-time loss of resolve will automatically lead the individual straight back to their former compulsive consumption.

Medicine can perhaps learn from the recovery world, where a distinction is increasingly made between a one-time return to drug use, a “slip” or “lapse,” and a return to the heavy and compulsive use pattern of an individual’s active addiction—the more stereotypical understanding of relapse. The distinction is meant to acknowledge that a person’s resolve to recover may even be strengthened by such lapses and that they need not be catastrophic for the individual’s recovery.

A return to substance use after a period of abstinence may also, in some cases, lead to less frequent use than before treatment. Such a trajectory has been identified in research on drug and alcohol treatment outcomes in adolescents. For some drugs, any reduced use is likely beneficial: Less frequent illicit substance use means less frequent need to obtain an illicit substance and fewer opportunities for infectious disease transmission or fatal overdose. It may also increase the likelihood that a person can be a supportive family member, hold a job, and make other healthy choices in their life.  

But as long as treatment is only regarded as successful if it produces abstinence, then even one-time lapses can trigger unnecessary guilt, shame, and hopelessness. If an individual feels like they are bad, weak, or wrong for taking a drink or drug after a period in recovery, it could potentially make it more likely for those slips to become more serious relapses. As it now stands, even a slip can produce a positive urine sample or force the honest patient to self-report a return to drug use, which can then trigger the judgment and punitive policies of their treatment program or the law as well as trigger the personal sense that they have failed again and there is no hope for their recovery.  

Another deleterious effect of equating treatment success with abstinence and drug use with treatment failure is that some people with SUDs are unready to give up substances completely. In fact, this is one of the main reasons people who could benefit from addiction treatment do not seek it. Although it may not be ideal or optimal, treating an opioid or methamphetamine use disorder even while a person continues to use cannabis or alcohol would be a net individual and public health benefit.

Realistically and pragmatically addressing addiction requires that we not let the perfect be the enemy of the good. Right now, we need all the good we can get. It also means offering supports for people with SUD that protect against the worst consequences of drug use. Syringe-services programs reduce HIV transmission and offer people an entry point into treatment; naloxone distribution to people who use opioids and their families reduces overdose fatalities. Neither of these measures increase drug use in communities that implement them, as critics often worry.

Other harm-reduction modalities being studied include personal drug-testing equipment like fentanyl test strips, as well as overdose prevention centers—places where people can use drugs under medical supervision, which are in operation in other countries and, as of late November, are available in New York City. Such services could potentially help mitigate some of the risks associated with lapses and relapses, such as heightened risk of overdose due to lost tolerance. The latter currently accounts for many fatal overdoses after people with an untreated opioid use disorder are released from prison, for example.  

Drug addiction is a chronic but treatable disorder with well-understood genetic and social contributors. It is not a sign of a person’s weakness or bad character. Continued or intermittent use of drugs, even by people who know they have a disorder and are trying hard to recover from it, must be acknowledged as part of the reality of the disorder for many who struggle with it. Just as we must stop stigmatizing addiction, we must also stop stigmatizing people who use drugs as being bad or weak, and instead offer them support to help prevent addiction’s most adverse consequences.

In their 2020 Commentary published in The Journal of Addiction Medicine (a journal of the American Society of Addiction Medicine aka ASAM), Kelly and Bergman state that:

“Individuals with regular and increasing very heavy alcohol consumption cannot be considered as maintaining ‘recovery’ due to toxicity and intoxication-related risks”. 

Why did they publish a commentary about recovery and very heavy drinking being incompatible?

The commentary by Kelly and Bergman is their response to an article published earlier in 2020 in the same journal.  It’s an article by Witkiewitz and others titled, “Can Individuals With Alcohol Use Disorder Sustain Non-abstinent Recovery?  Non-abstinent Outcomes 10 years After Alcohol Use Disorder Treamtent.”  In their article Witkiewitz and colleagues state,

“Nonabstinent AUD recovery is possible and is sustainable for up to 10 years after treatment.  The current findings align with recent proposals to move beyond relying on alcohol consumption as a central defining feature of AUD recovery.” 

Among other points, Kelly and Bergman note:

It looks to me like this is a full-blown open discussion of a recovery definition by academic researchers in the top peer-reviewed literature.  I don’t think the discussion is over with, and it should be fascinating. 

I could say a lot of things about a recovery definition that ignores the presence of drinking and that even ignores drinking at the level of very heavy drinking.  And I could say a lot of things about the Kelly and Bergman response.  For now, however, I’ll go a different direction and make some comments of my own that apply to the topic overall:

  1. I wish Kelly and Bergman would simply say “damage” or “additional damage” instead of “collateral damage” when describing the mental and emotional trauma experienced by those in the home, caused by someone who continues to drink.  To me, “collateral” makes family members sound peripheral rather than sound like people.
  2. The Dry Drunk Syndrome can be terrifying for everyone experiencing it – drinker and family members alike.
  3. Symptom suppression is not enough.  Recovery must be in the “do-direction”.
  4. Very heavy drinking is a danger to self and others. 
  5. It’s interesting to see a recovery definition that seems to come from the perspective of research data alone and removed from clinical experience and lived experience. 
  6. If we are coming at this from a clinical perspective, I wish we would include a focus on prognosis.  That is to say, how do we expect the person to do?  Or, “Are people getting better, or not?”  To me, that is the central question. 
  7. For example, if we are dying now or later from continuing cigarette smoking while drinking nothing, or drinking less, or showing improved psychosocial function, while meeting a new and improved recovery definition, while we continue our very heavy drinking, are we content with that?

For those that are interested, I’ll note that the Kelly and Bergman commentary has already produced a formal and published letter to the editor from Witkiewitz and colleagues. All three references are down below.

I might post more on this down the road.

References

Kelly JF, Bergman BG. A Bridge Too Far: Individuals With Regular and Increasing Very Heavy Alcohol Consumption Cannot be Considered as Maintaining “Recovery” Due to Toxicity and Intoxication-related Risks. J Addict Med. 2020 Oct 14. doi: 10.1097/ADM.0000000000000759. Epub ahead of print. PMID: 33060467.

Witkiewitz K, Wilson AD, Roos CR, Swan JE, Votaw VR, Stein ER, Pearson MR, Edwards KA, Tonigan JS, Hallgren KA, Montes KS, Maisto SA, Tucker JA. Can Individuals With Alcohol Use Disorder Sustain Non-abstinent Recovery? Non-abstinent Outcomes 10 Years After Alcohol Use Disorder Treatment. J Addict Med. 2020 Oct 14. doi: 10.1097/ADM.0000000000000760. Epub ahead of print. PMID: 33060466.

Witkiewitz K, Wilson AD, Pearson MR, Roos CR, Swan JE, Votaw VR, Stein ER, Edwards KA, Tonigan JS, Hallgren KA, Montes KS, Maisto SA, Tucker JA. A Bridge to Nowhere: Resistance to the Possibility of Some Heavy Drinking During Recovery and the Potential Public Health Implications. J Addict Med. 2021 Feb 10. doi: 10.1097/ADM.0000000000000796. Epub ahead of print. PMID: 33577228.

One of the problems with an aspirational and non-prescriptive definition of recovery is that it is hard to measure. The definitions most commonly featured in the literature share some elements including wellbeing or health, abstinence and citizenship. 

Clearly if you can’t define it precisely, then it’s hard to commission services to deliver on it. In this case proxy outcomes are used. There’s a lot of debate amongst professionals on recovery definitions and measurements, but what about service users? What do they make of ‘recovery’?

In a teasingly titled paper[1] (‘‘You’re all going to hate the word ‘recovery’ by the end of this’’: Service users’ views of measuring addiction recovery) Joanne Neale and colleagues scope the views of clients and patients in a variety of settings and run past them professional thoughts on recovery. How different are the perspectives?

What did they do?

The researchers ran five focus groups in two English cities with clients who use drugs, clients who drink, service users in detox, in residential rehab and with people who described themselves as ‘ex drug or alcohol users’. The numbers are small (44 service users), but this is qualitative research, so we’re looking for nuance, themes and meaning.

What did they ask?

Researchers asked service users to take a look at a list of 76 measures of recovery provided by ‘senior addiction service providers’. The list contains items as mundane as ‘going to the toilet regularly’ and ‘dealing with toothache’, but has enough meaty content (‘reduced drug use’, ‘using time meaningfully’) to make it seem robust.

What did they find?

Nine themes came out of the research with reasonable agreement across the groups:

  1. Expecting the impossible: service users felt that service providers expected more of them than was reasonable.

2. Outcomes that don’t capture the effort involved in recovery.

3. The dangers of progress (e.g. confidence turning into complacency)

4. The hidden benefits of negative outcomes: affective states in early recovery as indicators of change or tiredness being evidence of doing the work. 

5. Contradictory measures: the apparent finding that some recovery measures sit in opposition to each other (e.g. reduced drug use vs. abstinence or independence vs. seeking help and support) 

6. Failure to recognise individual differences: programmes being too generic.

7. Entrenched vulnerabilities: resistance to some issues (e.g. trust) because of experiences and perspectives and this not being recognised 

8. Getting service users’ feelings and behaviours wrong (e.g. measuring getting appetite back when appetite was good all along)

9. Getting the language wrong: outcome measures clearly designed by people who didn’t have experience of addiction and recovery

Reflections

I wondered where were the people who defined themselves as being ‘in recovery’? Those in longer term recovery who had had experience of treatment may have had more nuanced views. The main problem with having run focus groups with such a disparate group of people is that you were always going to get such a broad spectrum of opinion that making any sense of it was going to be challenging, though this is a good effort in that regard. What you do with it is harder still.

The point, I suppose, is that it is not possible to have a reliable single tool that measures recovery. Recovery is a complex process and it’s not fundamentally a clinical journey, but a social one and doesn’t fit under the microscope easily.

Then there’s the issue that if some of points had been explained or dissected a bit, a rationale given say, then there may have been more agreement between professional markers of recovery and service users’. To be fair, the paper does acknowledge this. I didn’t end up hating the word recovery, but I did struggle to make sense of the meaning of the findings. 

That said there’s still plenty to be gleaned from this research.

Here are some insightful quotes from the paper:

“Thus, our findings support Laudet’s argument that recovery is experienced as more of a process than a fixed state or end point (Laudet, 2007).”

“Recovery is often more about ‘coping’ than ‘cure’; for example, managing negative feelings and bodily changes rather than trying to prevent them from occurring or denying their existence.”

“Recovery will require balancing acts which involve developing confidence without becoming over confident; taking control whilst also handing over control to those who might help; acknowledging the need for both dependence and independence; combining self-belief and self-doubt; and being supported whilst supporting others if possible.”

“If we set expectations too high, we risk further excluding those who are already marginalised; if we set expectations too low, there will likely be little satisfaction in making progress.”

Finishing

I’ll finish with something most of us will want to endorse, and more importantly will hopefully want to do something about. It’s from the authors:

Whilst undoubtedly an important scientific exercise, the clinical utility of measuring recovery will almost certainly be maximized when people who use services engage in the process because they find it interesting and helpful, rather than because it is imposed upon them by a target driven treatment system.

Neale et al, 2015

This is a version of a previously published blog.

Continue the discussion on Twitter @DocDavidM

[1] Joanne Neale, Charlotte Tompkins, Carly Wheeler, Emily Finch, John Marsden, Luke Mitcheson, Diana Rose, Til Wykes & John Strang (2015) “You’re all going to hate the word ‘recovery’ by the end of this”: Service users’ views of measuring addiction recovery, Drugs: Education, Prevention and Policy, 22:1, 26-34

Someone shared this video several weeks ago and it really resonated with me.

I’ve been an addiction professional for 27 years, so I’ve learned a lot about the effects of opioids and the experience of opioid withdrawal from doctors, counselors, clients, recovering people with a history of opioid addiction, and other experts. However, there’s something very powerful about his detailed description of his withdrawal experience. For me, it was made more powerful by the fact that he is not someone with the disease of addiction.

Here are some of the things that stuck with me:

This man was physically dependant, but not addicted, and he still experienced this excruciating, extended suffering that he described as trauma.

Let’s think for a moment about all of the elements of addiction that this man did not experience.

Brian Coon recently explored the disappearing concepts of physical and psychological dependence. The absence of psychological dependence is one frame for thinking about how his experience differs from a person with addiction.

We can also use the 2011 ASAM definition of addiction to explore what he did not have to confront during his ordeal (emphasis mine):

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.

ASAM

That this man experienced such trauma and difficulty without the craving, impaired control, diminished insight, or the psychological, social and spiritual manifestations of addiction speaks to the heroic ordeal undertaken by people with addiction seeking recovery.

We shouldn’t need a non-addict to validate the experience of people with addiction, but I found these take-aways very important:

It also speaks to the harm that can be caused by abandonment of chronic pain patients and the importance of not pitting the problems of pain patients and people with addiction against each other.

America is facing a huge surge from the impact of increased substance misuse, in part due to COVID-19, but we have been moving in this direction for a long time. Some of the people who are overusing substances right now will end up with severe substance use disorders. This means more people needing help. Addiction has a massive impact on our society, driving up costs, reducing our gross domestic product and eroding the health and welfare of our communities. Recovery and the strengthening of recovery community offer opportunities to turn these dynamics of loss and destruction into processes of rebuilding and revitalization. For all of our focus on the addiction epidemic, the thing we have not yet properly invested in is the development of recovery community organizations. This is despite the fact, as noted by Dr H. Westley Clark those modest investments in recovery community organizations have paid dividends. Now is the time to focus on long term recovery fostered within our recovery communities in all their diversity. 

The overarching problem is that we keep building the same care system that repeats the same mistakes decade after decade. Care and support over time shifts to an acute orientation and focused on the individual instead of the development of recovery capital at the community level because of our funding mechanisms. Services become over bureaucratized, overburdened, and focused too narrowly on fee for service units at the individual level because this is the model of care we adopt to. I am oversimplifying here and I don’t want to discount huge gains we have made around the edges over the decades. Yet, we make the same mistakes repeatedly over time. A large factor in why this occurs is because society has a vast reservoir of stigma against people with addiction and those of us in recovery. We set up barriers to helping “those” people. We end up over time back to an acute focused, short term, fragmented model. It breaks down, and we start building it all over again to focus on recovery, it works for a while and then it decays into a dysfunctional and fragmented system that does not meet our needs. Rinse, wash repeat.

One of the themes that I heard come out of the interviews with persons who helped start the new recovery advocacy movement was that they listened to each other and spent time identifying common themes and positions in which they broadly agreed on and were excited to support. A number of the interviewees thought we should have continued to have broad dialogue sessions to strengthen our common cause but in the rush of the moment, it did not occur.

I talk to people around the country daily. I hear division, but when asked if the differences are surmountable, the resounding answer is yes. What would happen if instead of a zoom call with a set agenda to achieve a narrow goal or a push poll or a process to use us for other agendas, we were in face to face in rooms together to simply answer the question what do we agree on and how do we work towards those ends? Not set up as by others, but by us, for us.

I personally do not think that there is anyone in the recovery movement that given some time in a face-to-face setting that we would be able to mutually agree on a few broad imperatives that are so important that other minutia of differences would be cast aside to achieve. A common agenda to work on to avoid getting divided up and marginalized. To be clear, although I have listed mine below, I am not here to espouse what those things should be, I think that they would rise up out of the process of dialogue.

This is where I would start a discussion on such a plank:

  1. Recovery communities are the experts on what is needed in their own communities. Recovery communities are diverse, and our efforts must be supported and funded equitably designed by us to serve our own communities.
  2. Discrimination and stigma against us must end. Systems that tokenize us are perpetuating discrimination. It is not acceptable to tokenize our voices. There has to be an accounting for how this has happened historically to marginalize us in order for healing to occur and for our society to reap the full benefits that a recovery orientated model of care can offer.
  3. How we do things matters. Our recovery communities are quite often vulnerable, and there are many groups, including some run by people in recovery that take advantage of our own people for material gain. We must establish a shared set of values and ethics and adhere to them to protect the most vulnerable among us.  

If you are in recovery and are invested in changing our system to meet the needs of your community, I hope you have your own short list on what such a national recovery plank would look like, even your list does not look like mine. I firmly believe that we can build a broad agenda to move our efforts collectively forward. my hope is that the new Office of Recovery within SAMHSA will foster such conversations to help us heal our communities.

We are the people who are supposed to make this change, the next generation is depending on us to do so.   

As we reflect on this extraordinary and challenging year, we are filled with gratitude for the professionalism, dedication, and perseverance of the treatment court field. These are uncertain times, and yet you continue to be beacons of hope and humanity in your communities. From all of us at NADCP, thank you. NADCP exists to provide you with the best training, technical assistance, and resources. This year, you showed up in record numbers! From virtual team training to the new E-Learning Center, the level of engagement was unprecedented.

Throughout the year, we continued to tell the story of treatment court success in the news and on social media. Powered by your incredible stories of treatment court transformation, millions were exposed to the lifesaving work of treatment courts.

In August, more than 4,000 treatment court professionals came together for RISE21. Over four days and hundreds of sessions, RISE21 attendees expanded their understanding of critical issues facing treatment courts today. We are already hard at work planning RISE22, stay tuned for details in January.

Most importantly, this year, you helped connect over 150,000 people to treatment and recovery support. You reunited families, strengthened your communities, and proved to the nation why treatment courts are so vital to justice reform.

The post appeared first on NADCP.org.

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