May 14, 2021
Deni Carise, PhD
Chronic diseases are broadly defined as conditions that last one year or more and require ongoing medical attention or limit activities of daily living or both. Chronic diseases such as heart disease, cancer and diabetes are the leading causes of death and disability in the United States.
In 1956, the American Medical Association (AMA) declared alcoholism an illness, and in 1987, the AMA and other medical organizations officially termed addiction a disease. Now, the National Institute on Drug Abuse (NIDA) defines addiction as a chronic, relapsing disorder characterized by compulsive drug seeking, continued use despite harmful consequences, and long-lasting changes in the brain. The disease of addiction is considered both a complex brain disorder and a mental illness.
Why is this important? For reasons related to stigma and misunderstanding, addiction—preferably termed substance use disorder or SUD—has long been a neglected field of study when it comes to best practices and outcomes. Sure, numerous treatment modalities and “cures” abound, each with their own way of defining of success. But therein lies the problem.
If a family seeking SUD treatment for a loved one visits a website or calls a treatment center, they are bound to get that center’s uniquely tailored success metric. It could be that a certain percentage of patients remained sober one month post-discharge. It could be that a certain percentage of them report living fulfilled lives after treatment. Good things, yes. But standardized or comparable across multiple sites or providers, no. Scientifically validated measurements of success like those we see for heart disease, cancer, and diabetes have not been broadly developed or adopted in this field.
“99% of our patients report being sober at one year!” claims one treatment center website. Possible translation: 99% of the patients who fly back to celebrate at their alumni weekend report being sober. Self-reporting and self-selection are inherently misleading.
The problem is that SUD outcomes measurement often relies on a treatment program polling former patients at regular intervals, asking them if they have used drugs or alcohol since discharge. A program alum may self-report that they are gainfully employed, in a healthy relationship, have stable housing, and maybe finished some training or education. But if they had even one slip-up—one drink or one-time drug use—much of the SUD field considers this a treatment failure. Likewise, a person may be languishing in every area of their life, but so long as they don’t report using substances, this is considered success. Is it really though?
Imagine using this metric for someone with one of the other chronic diseases. The patient has a recurrence of high blood pressure, their cancer returns, or they’ve had a blood sugar episode. These are all verifiable events we hope don’t happen, but few would say the person “relapsed,” “failed” at treatment, or argue that ineffective treatment was to blame, especially if there were other benefits during that time such as a decrease in the number of days with high blood sugar, blood pressure, etc.
Additionally, in all of medicine for chronic illness, evidence of success in treatment is measured by an individual’s performance while they are having treatment, not after treatment ends. If someone stops treatment (in this case medications) for diabetes or heart disease and their symptoms return, we wouldn’t then say treatment didn’t work because the problem came back. In fact, we would call that evidence of success.
Also considered success in the treatment of other chronic problems is continuation (retention) of treatment and fewer symptoms of the illness. Importantly, symptoms need not be 100% eliminated for a person to be “successful.”
So, why does the SUD field insist on measuring performance after treatment stops? We measure whether symptoms (using drugs or alcohol) go back up when the person is not in treatment. Expended periods of time in treatment are often viewed as being negative. And while I’m not implying that people stay indefinitely in high-intensity treatment such as inpatient or residential, at the point they are able to maintain their recovery, brief monthly check-ins could ensue, much like we do for other chronic illnesses. We must come to realize that having 100% abstinence 6 to 12 months after an individual stops treatment doesn’t truly illustrate the value or benefits of treatment. And sadly, individuals feel like failures for not reaching these milestones.
If the SUD treatment field ever wishes to be taken as seriously as treatment for other chronic diseases, if we ever want to be able to report real outcomes, it is imperative for us to create and agree on the delivery of evidence-based practices and scientifically valid measures of their effectiveness. We must encourage the idea of continuing care in the SUD treatment process and fight for coverage of that care. And when we report outcomes, we need a universal language of efficacy. Because when programs report success that only reflects positively and omits key details, what is the point?
President Joe Biden recently released his “Drug Policy Priorities for Year One” that included expanding access to evidence-based treatment. The time is critical for the field to bear accountability. The public deserves better.
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