One of the most sought-after tickets on Broadway these days is “Angels in America,” a revival of Tony Kushner’s seminal play about the AIDS crisis and its aftermath. While only a few of us will be fortunate enough to see the show in person, everyone can benefit from the following insight: When the play originally debuted in 1991, HIV/AIDS was considered a death sentence and slapped with a stigma that isolated and ostracized those with the disease and their families. The same type of stigma is happening now with substance abuse and the opioid epidemic.
Since 1991, we have learned how to treat, humanize, and support those with HIV/AIDS so they can live long and productive lives. How that happened is a complicated story. But the first step was as simple as it was bold: recognize and address the stigma.
Rather than view HIV/AIDS as something that struck only particular groups in the population and that was directly tied to risky sexual behavior, we’ve come to see it as a disease that can blindside anyone, including a child like Ryan White who contracted it from a contaminated blood transfusion.
The less we stigmatized AIDS patients and their loved ones, the more we were able to focus on the disease. It’s time to do the same thing with substance use, misuse, abuse, addiction, and the current opioid epidemic.
The way we talk about this health crisis is deeply problematic. We speak of the men and the women affected by this disease as “addicts,” as if they’d succumbed to the drugs because of some inherent moral failing. As in the early days of HIV/AIDS, many Americans are still ashamed to speak of the condition. As David Armstrong wrote in STAT in December of 2016, “publicly acknowledging that a family member suffered from an addiction to drugs, or died of an overdose, has long been a taboo subject — one best kept secret among family and a few knowing friends.” This silence is keeping too many people from receiving the help they deserve and from challenging the current social/clinical norms that perpetuate the stigma. The lack of conversation is enabling our inaction, further delaying the much-needed shift in our culture.
There’s a lot we can do to fight back that is relatively simple and cost-effective.
First off, let’s change our language. Words matter, and they can make or break opportunities to empathize, partner, and support. Just as we don’t call people struggling with obesity “fat,” let’s shift our verbiage to humanize addiction. The message that dependence on chemical substances is not a character flaw but a chronic illness will shine through in words, demeanor, and empathy. Instead of using dehumanizing words, use proper, person-centric terminology — people dealing with addiction. They deserve compassion and treatment.
While language can help all of us encourage and reinforce a shift in our mindset, health care professionals can take a step further by learning to spot signs of addiction earlier and treat it before it’s too late. At the moment, most U.S. education programs for health professionals have little curricular time dedicated to substance use, addiction, dependence, and their implications. This lends itself to a process where clinicians’ social primers, biases, and stereotypes surpass the science of this disease.
If health care providers continue to view addiction only through the lens of extremes — encountering it when patients come in at the height of a crisis, seeking medications, or suffering from an overdose — then we won’t be motivated to change our approach. Too many lives have been affected by addiction for us to remain in an uneducated, dis-compassionate state.
Imagine for a minute that we viewed heart disease the same way that many Americans view addiction. In this scenario, cardiac arrest happens only to people who binge on fatty foods or smoke too much or never exercise and do little to care for themselves. And doctors treat patients only when the heart attack finally hits. That’s essentially what we’re doing with substance use today. If we educate health care professionals to ask the right questions (with the right tone, affect, and interest), we can support and treat addiction early, before it progresses. We can begin with a few more hours devoted to addiction in medical, dental, nursing, and other schools for health professionals, along with a few good team-based protocols in clinical settings.
Finally, and at the risk of sounding Pollyannaish, our success in curbing this epidemic of addiction depends on two intricate realizations.
The first is that we aren’t facing the opioid epidemic, but our opioid epidemic. If you don’t suffer from addiction or aren’t related to someone who does, it’s easy enough to dismiss addiction as someone else’s problem. It’s not. With so many lives at stake, healing is dependent not only on physicians and patients and families but on all of us demanding better compassionate solutions. Again, AIDS is a useful example: In the early days of that epidemic, lack of general knowledge and interest led to inaction, with legislators failing to enact policies that could have saved many lives simply because they sensed AIDS was not a problem anyone in particular cared about. Many Americans who wanted to believe they knew no one with AIDS suddenly realized that the disease was hitting closer to home when they learned that a friend, family member, or loved one had been struggling silently with it for years. We’re seeing the same pattern with addiction, and we must break it.
To do that, we must offer people suffering from substance dependence not only chemical solutions, like Suboxone and methadone, but also the necessary psychosocial support needed to address the disease, including adequate housing and employment and the support of family, friends, and the community. We must offer them the reassurance that we’re there for them and are not judging them, the relief of knowing that the disease they’re suffering from is preventable, and the comfort of realizing that all of us — physicians, family members, friends, lawmakers, and others — are taking the steps necessary to provide remedies. In other words, we must offer people struggling with addiction hope.
We’ve done it before with HIV/AIDS; it’s time to do it again with addiction.
Sandeep Kapoor, M.D., is the director of screening, brief intervention, and referral to treatment at Northwell Health and assistant professor of medicine and emergency medicine at the Donald and Barbara Zucker School of Medicine at Hofstra/Northwell.
Dr. Kapoor, I want to congratulate you on your excellent perspective regarding the necessity to dramatically change our attitudes towards persons dealing with addiction. I recently “retired” as Vice President Behavioral Health at St. John’s Episcopal Hospital in Far Rockaway after 30 years of service and almost 50 years post MSW. For much of my career I’ve had administrative oversight for Chemical Dependency Operations in New York City facilities including a stint at the NYC DMH as Assistant Director of this agency’s Office of Planning and Project Management.
As you can imagine I’ve seen the evolution or lack of same regarding chemical dependency treatment and the public perception and health care providers attitudes towards those dealing with this disease.
I therefore applaud your comments urging all involved to alter the way this cohort of people are treated and viewed.
Thank you, Nat Etrog
James, do you mean like they have been doing to pain patients for years. Apparently everybody as been through it except you. Yes I am mad and getting more abrasive every day we are abused. As time goes on, I really don’t give a crap who I offend, just like they haven’t. That includes you.
Dan– your comments are offensive and closed minded. If we are to advocate for others (in your case I think people dealing with chronic pain), advocacy is best amplified by NOT dismissing and insulting other people in need.
Agreed on all points. Unfortunately no one is talking about mental illness this way either. We have been in the middle of a mental illness epidemic for years – especially among our youth. Many – if not most – people struggling with addiction are self-medicating unidentified or untreated mental illness. I just can’t understand why this is not a focus of this discussion EVER. If we don’t fix the mental health system in this country I doubt we can fix the opioid epidemic. You need to get to the root of the problem. I do recognize there are many other contributors but self-medication is by far the most common. Let’s destigmatize both addictions and mental illness. They are both brain diseases.
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