Stigma and Substance Use Disorder: Breaking Down Barriers to Treatment and Sound Public Policy
There may be no more dangerous contributor to the current opioid epidemic than stigma. Stigma is the lack of respect for a person or a group of people because they have done something or have traits of which society disapproves. And stigma isn’t just an abstract concept — it’s present every day in how society perceives people with a substance use disorder (SUD). People with a SUD are referred to as addicts, junkies, and worse. When we call people things like addicts or junkies, not only are they incredibly judgmental words, but they also pigeonhole someone's entire being to that one characteristic.
And I have my own experience with stigma. As someone who’s been in recovery for 30 years, I still experience it. When President Obama chose me as the next Director of the Office of National Drug Control Policy (ONDCP) in 2014, one staffer said that because of my addiction history, there was no way I would be confirmed by the Senate — and this was for a job where knowledge around addiction and substance use disorder is essential. Ultimately, I was confirmed, and my background was essential in communicating our mission to many of the individuals and groups I met with.
It’s clear that the impact of stigma isn’t just personal. Clinical outcomes and public policy are held hostage by stigma and fear. Negative and stigmatizing attitudes from clinicians lead to the under-treatment of patients with substance use disorders and a reticence among patients to share important information about their substance use for fear of judgment and retribution. Certainly, general public attitudes contribute to these opinions among medical professionals but are also compounded by a lack of dedicated and specific training for clinical staff as part of routine medical education and clinical preparation.
Negative and stigmatizing attitudes from clinicians lead to the under-treatment of patients with substance use disorders.
In one study, Dr. John Kelly of the Recovery Research Institute gave nearly identical patient vignettes to doctoral level mental health clinicians. Using the term “substance abuser” was shown to cause clinicians to assign blame and to agree with a punishment for the patient, more so than when the term “substance use disorder” was used. The use of the terms “clean” and “dirty” still pervade references to whether or not someone is in recovery or reference to a drug toxicology screen. Many within the recovery community still refer to their “clean time,” even as these folks bear a special responsibility to convey appropriate language.
Furthermore, the language we use reflects our belief system. While the neurobiology of addiction has clearly demonstrated the validity of the disease approach to substance use disorder, the language used to describe both the condition and those affected remain rooted in our belief that people with a substance use disorder are somehow morally flawed. For decades, the public at large has viewed, and continues to view, addiction as simply a matter of individual choice. This view is largely driven by a lack of scientific understanding of the genetic, environmental, and neurobiological aspects of substance use disorders and addiction. Language is perpetuated by the general public, by the media, by the medical community, and even among those in the recovery community. Historically, we have used language to isolate and to treat those affected in a less than compassionate and therapeutic way.
At ONDCP in January 2017, we issued guidance to all federal agencies that encouraged them to use only clinically appropriate language on their websites, documents, and other public-facing communications. Later in 2017, The AP Stylebook, which provides guidance to journalists seeking to use precise language, discouraged the use of words like "junkie," "addict," and "abuser" and encouraged reporters to replace these words with phrases like "he was addicted" or a "person with a substance use disorder." These changes reflect a movement toward person-centered language similar to that of other disabilities. Changing this language is not just a polite thing to do. As is clear, the words we use have a dramatic impact on both clinical care and how medical professionals actually see and treat people with addiction.
The AP Stylebook, which provides guidance to journalists seeking to use precise language, has discouraged the use of words like "junkie" or "addict" in favor of person-centered language similar to that used for other disabilities.
As is often the case with stigmatized diseases, those affected by substance use disorder internalize those beliefs. This self-stigma becomes a major determinant in why those with an SUD delay seeking care or avoid care altogether. Self-stigma also substantially contributes to a profound sense of isolation and loneliness — which can further exacerbate the disease and lead to potentially fatal consequences. The 2016 National Survey on Drug Use and Health asked respondents to cite the reasons why they did not seek treatment even though they knew that they had a substance use disorder and needed treatment. Twenty-five percent of respondents said that fear of negative opinions among neighbors and friends and their employer were significant barriers to seeking care. These people recognized that they needed treatment, but the stigma was strong enough to prevent them from even looking for it.
One cannot minimize the role that stigma continues to play in thwarting evidenced-based, compassionate public policy. This will only change through concerted efforts to reform our language, reform our images and portrayals of those affected by addiction, and appropriately share sympathetic personal narratives. Eliminating stigma is crucial as public health and healthcare professionals promote ways to get more individuals with substance use disorder into treatment. Addressing stigma will also address the way we develop public policy, like access to insurance coverage, or the traditional law enforcement approach to addiction, such as incarceration rather than diversion to treatment. To reduce the morbidity and mortality of the current opioid crisis, everyone can make a difference by working to reduce stigma and its consequences.
This article originally appeared on BASIS, an online publication of the Cambridge Health Alliance.