By Susan Kim, Americorps VISTA RxSafe Marin

I’ve noticed a few PSA style ads for opioid treatment, mental health and stigma. Even beloved children’s show Sesame Street has created a series of videos that feature 6-year-old Karli whose mom is struggling with addiction. Sesame Workshop says it wants children to know they aren’t alone and give them the tools to help cope with the difficult feelings they’re having if their parents are suffering from addiction. Children have moldable, easily impressionable minds, and Sesame Street is the teacher. But this time, instead of teaching ABCs or 123s, they’re teaching children to view addiction as a disease. I like the Sesame Street one best because it’s prevention. That’s the best outcome… Prevent it before it starts.

I lost my son to an opioid overdose so for me, I’m here for all of it. I celebrate every time the opioid epidemic is mentioned. But that’s me. What concerns you about substance use disorder? Are there concerns in your community? Do the people who create this messaging hear you? Are we being told to be concerned about the right concerns? I was curious so I did a little research.

According to the latest estimates, three million US citizens have opioid use disorder and more than 500,000 in the United States are dependent on heroin, there will be a lot of folks needing treatment. Since 1999, almost 750,000 Americans died from drug overdoses, and escalating rates of drug addiction have contributed to recent decreases in life expectancy. There’s a large body of research that indicates stigma as the largest barrier to treatment. Stigma is not based on fact, to the contrary, it is persistent, pervasive, and rooted in the belief that addiction is a personal choice reflecting a lack of willpower and a moral failing. It’s all subjective. Even the severity of the stigma varies from drug to drug. Rates of stigma are extremely high both in the general public and within professions whose members interact with people with addiction, including the health care professions.

In a recent study published in the journal “Drug and Alcohol Dependence” by researchers from the Harvard Medical School (HMS) and Recovery Research Institute and Center for Addiction Medicine at Massachusetts General Hospital (MGH), Corrie L. Vilsaint, PhD, a research fellow at MGH, and her colleagues surveyed a nationally representative sample of 2,002 US adults who were in recovery and found that:

  • 50% of the people surveyed said that others ‘assumed I would relapse’,
  • 38% said they felt like, at times, they were being held to a higher standard than other people,
  • 18% reported that they felt like they had been treated unfairly by the police,
  • 16.2% said they were denied employment,
  • 7.7% said they were denied the right to vote,
  • 15.2% said that it was hard for them to get medical insurance,
  • 11.2% said that insurance would not cover some of their medical costs, and
  • 9.4% said that they were denied housing, all because someone knew of their prior history of alcohol or other drug problems

Untreated drug and alcohol use contribute to tens of thousands of deaths every year and impact the lives of many more. Healthcare already has effective tools including medications for opioid and alcohol use disorder that could prevent many of these deaths, but they are not being utilized widely enough due to the stigma that surrounds people with addiction. Stigma is a problem with health conditions from HIV to mental illnesses. Some gains have been made in reducing stigma around certain conditions like depression but little progress has been made in removing the stigma around substance use disorders. People with addiction continue to be blamed for their disease.

Sometimes it’s good to say it like it is and address the elephant in the room. People who are addicted to drugs are difficult to deal with sometimes. They lie or steal and can behave aggressively, especially when experiencing withdrawal or intoxication-triggered paranoia. It’s an obstacle to ending addiction stigma. These behaviors wear their loved ones down, to the point where it’s hard for them to show them compassion, so it’s easy to understand why the people/community may be rejecting or unsympathetic. Let’s be real, those unstated stigmatizing beliefs or assumptions about personal responsibility — and the false belief that willpower should be sufficient to stop drug use — are never entirely absent from most people’s thoughts when they interact with someone with a drug problem.

Another obstacle is the people/community’s continued resistance to the science proven fact that addiction is a disease, a chronic relapsing (treatable) brain disease. Prolonged drug use alters brain circuitry that is involved in self-regulation and reward processing, as well as brain circuits that process mood and stress. For a person with a serious substance use disorder, taking drugs is no longer pleasurable or volitional, for the most part, but is instead a means of diminishing excruciating distress and satisfying powerful cravings — despite often devastating consequences.

Factor in the fact that some people are more vulnerable than others to developing a substance use disorder because of a genetic predisposition, adverse social environmental exposures, traumatic life experiences, or other factors. To recover, they often need external help and support, evidence-based treatment, and medication.

Currently, there are efforts to reduce addiction and Anti-Stigma initiatives are being rolled out by health systems, state agencies, local health officers, and other well-intentioned groups but are these initiatives based on evidence on how best to reduce negative attitudes, correct misconceptions, or target messages to various audiences? Launching stigma-reduction campaigns without rigorous pretesting of messages can lead to wasted resources and unintended consequences.

The evidence base for effectively combating public stigma related to addiction is hugely underdeveloped, available research points to a few principles that can guide stigma-reduction campaigns.

1st Use of “person-first” language is essential for stigma reduction. Research has shown that use of terms such as “substance abuser” is more likely to exacerbate stigma than use of person-first language such as “a person with a substance use disorder.” Read more about stigmatizing language at RxSafe Marin.

2nd Emphasizing solutions appears to reduce stigma. Highlighting the availability of effective treatment helped to reduce stigma and some limited evidence suggests that such “treatment works” messaging also lessen addiction-related stigma. Research has shown that emphasizing overdose prevention can reduce negative attitudes about harm-reduction programs.

3rd Research suggests that use of sympathetic narratives — stories that humanize people with addiction — may reduce stigma, but the devil is in the details. Local stories with real people, stories of struggle and hope are especially powerful.

And finally, stigma-reduction messages should emphasize societal rather than individual causes of addiction. Social psychologists have described a bias that comes into play because humans tend to assume that an individual’s actions depend more on personal characteristics than on situational or societal factors. This bias may lead to attributing addiction to poor choices as opposed to factors such as poverty, a history of trauma, or structural barriers to accessing effective treatments. Research is needed to test the effects of messages highlighting societal causes of addiction.

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