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Stigma and Substance Use Disorders – A Long Road Before Us

Ever since Prince’s lifeless body was discovered alone in an elevator at his Paisley Park estate outside of Minneapolis, I’ve found myself having a rather prurient interest and self-righteousness about “being right” concerning the cause of his death, which from the outset I suspected was drug-related. Looking back, my reactions were ones that add to stigma and stereotyping about addiction: “Ah, yes, another celebrity bites the dust because of addiction.”

As evidence mounts suggesting I am probably right, I feel somewhat ashamed of those rather judgmental initial reactions. So what if addiction was the cause of death? How very sad that another relatively young and talented person has fallen. If Prince was addicted to prescription painkillers, as news reports suggest, perhaps it all started with debilitating pain caused by injuries resulting from years of hyperactive stage performances – in high heels, no less.

Societal Reactions to Addiction

Joe Shrank – a well-known addiction writer and social worker – nailed the state of societal feelings and reactions to addiction in a recent article titled Prince and the (Addiction) Revolution where he stated:

“Addiction is still trapped where HIV was in the 80s, cloaked in mystery, fear, shame and, worst of all, silence.”

Shrank went on to share personal experiences in which he was asked to comment about deaths of celebrities such as Whitney Houston. Though these deaths were quite obviously related to drugs, he received instructions from interviewers such as, “Just don’t say it was drugs.” He concluded that, while the U.S. is on the verge of change with addiction and the rhetoric is starting to match science:

“The actions are lagging, limping along in an old and stale culture and belief that addiction is a character flaw.”

It all goes to show that false perceptions, misconceptions, and stereotypes about people with substance use disorders (SUDs) run deep and fuel stigma that many grassroots organizations are trying to fight. They include Shatterproof, A New Path, Families for Sensible Drug Policy, and Faces and Voices of Recovery.

But now, concerns about stigma have “gone national” with a newly released U.S. government report from the National Academies Press titled, Ending Discrimination Against People with Mental and Substance Use Disorders: the Evidence for Stigma Change.

A National Effort to Fight Stigma

Citing various national efforts to improve lives and safeguard the rights of people with mental and substance use disorders occurring through various acts, including the Mental Health Parity and Addiction Equity Act of 2008 and the Affordable Care Act, the new report notes, “Positive change in American public attitudes and beliefs about mental and SUDs has lagged behind these advances.”

Unfortunately, although research shows that public knowledge about mental health disorders and SUDs has increased, beliefs about the underlying causes of SUDs have shifted away from the idea of illness and toward the notion of blame.

And despite greater public awareness of stigma associated with both types of disorders, public stigma remains at a high level. The National Academies Press report states that perceptions about the dangerousness and unpredictability of people with both problems have increased over time.

Somewhat ironically, the report also notes, “Stigma is not a problem that affects only a few.” Most estimates agree that roughly 1 in 4 or 1 in 5 American will experience a mental health problem or misuse alcohol or drugs during their lifetimes. Moreover, many people are not getting treatment they need – in 2013 of the 22.7 million people aged 12 and older who met diagnostic criteria for a SUD, only 11 percent received treatment at a specialty facility.

The authors of the report conclude that, to reduce stigma associated with mental and substance use disorders, there’s need for a coordinated and sustained effort over two or more decades – one that should include a multi-pronged, evidence-based national strategy under leadership of the U.S. Department of Health and Human Services. While the report’s authors acknowledge the work of current organizations engaged in anti-stigma campaigns, they say these efforts are largely uncoordinated and poorly evaluated, thus unable to provide an evidence base for future national efforts.

While a large national campaign may be more effective at scale, some of these smaller campaigns have been well organized and have made a good “dent” in anti-stigma efforts. Plus, it’s often the smaller campaigns that end up bringing an issue to light in the first place. With enough smaller efforts, issues eventually reach the national agenda, not to mention that while they may not succeed in changing societal norms or perceptions, they are still saving lives and touching people’s hearts.

Why We Can’t Wait – A Case in Point

As the new National Academies report came across my desktop, so did a newspaper report about a small community’s efforts to ward off the opening of a new residential treatment facility for people with substance use and eating disorders.

A group of community residents banded together, organizing a “Residents Against Rezoning” campaign. They have formed their own website and Facebook page, are holding a series of public hearings to address their concerns, and have an on-line petition to stop the rehab’s development. However, a number of their concerns reflect stereotypes and stigma about people with SUDs. For instance, the group’s website says that their research has found rehab facilties coming into residential areas result in a probable increase in crime, possible safety concerns (especially for single adults and children), and property devaluation. They also argue that, if their locale is used in the rehab’s marketing, the town’s reputation will plummet.

Gold said they chose this location (in northern New Jersey) because they identified the state as being in desperate need of treatment beds and having significant problems with heroin abuse.-Anne Fletcher I spoke with Stewart Gold, J.D., chief legal officer for Advanced Recovery Systems (ARS), the national organization that wants to expand its residential facilities to this community. One of the first things he said to me when we began discussing the community’s concerns was, “We understand; people aren’t informed. We don’t fault them.”

Gold said they chose this location (in northern New Jersey) because they identified the state as being in desperate need of treatment beds and having significant problems with heroin abuse. He also said, “We’ve chosen a beautiful property for a therapeutic experience for patients.” (Of the 157 acres to be purchased for the rehab, only about five percent will be proposed for use by the facility, and ARS intends to propose a carve out of approximately 90 acres to be a dedicated conservation area.)

Gold went on to tell me about how he’d just been a guest on a radio call-in show during which a local mother disclosed her son’s experience shopping around multiple treatment centers and being turned away because they were too full, his needs weren’t high enough, or they were too high. Months later, he died of drug-related causes. Gold said, “Last year, forty-six deaths in this county were related to drug and alcohol use. People need a center that will open their doors to them.”

Recovery and Community Reaction

The outpatient substance use and mental health disorder facility at which I work, Minnesota Alternatives, is in a middle class neighborhood, with residential homes all around us. I asked director and owner Paula DeSanto, MS, LSW if we had any problems from the community when setting up our facility about seven years ago. She said there were none, but added:

“Residential programs usually require city/zoning approval that includes community notification. They run into a lot of community concerns because some individuals don’t want ‘those people’ in their neighborhoods. Outpatient programs do not have the same level of scrutiny – we need to get county but not community approval. So we can open without the community knowing that we’re coming.”

As for criminal incidents brought on by our clients, DeSanto said, “No, we have not had any client issues related to crime in our area.” I find that particularly interesting given that many of our clients are ordered by the judicial system to be in treatment and/or have pasts involving the legal system. Furthermore, we are a harm reduction facility with clients who sometimes show up “under the influence.” (Generally, they’re sent safely home and told to come back when they’re not impaired.) They have freer reign than clients in a typical residential facility and still have not caused criminal problems in the surrounding community.

I’d say that, while a national effort to fight the stigma of substance use and mental health disorders is to be lauded, we can’t wait around while the powers that be pull this together. Smaller more grassroots efforts need to power on.


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