Last month, Dr. John Kelly gave a presentation at the National Institute on Drug Abuse in Washington D.C. It's an important agency that funds more than a billion dollars in addiction and treatment research.
Kelly, an addiction researcher at Harvard and director of Massachusetts General Hospital's Recovery Research Institute, talked to the group of 30 or 40 top officials, he recalls, about how language can affect people's attitudes and behaviors about certain diseases and conditions. But at the end of his 90 minute talk, he says he just blurted this out.
"I said, know 'I'm being bold here, but I think it's time that we do change the names of our institutes. If not now, when?'"
So, standing before a group of important people who run a major federal agency, which has carried the same name for four decades, Dr. Kelly basically asked them to get rid of their agency's name...because he says that word abuse is outdated.
"I think the National Institute of Drug Addiction could be a different term that does not raise any red flags," he said.
Catching up with the science
Dr. Kelly is behind a growing movement in the scientific and advocacy community to reframe the language of addiction.
He's not proposing that people stop using certain words and replace them with others just to be politically correct. He says some terms that are still being used no longer reflect what scientists now know about how addiction works. They can also be uneccesarily stigmatizing during a time when the nation is grappling with a growing opioid crisis.
For Kelly, substance 'abuse' connotes certain moral choices someone makes in continually using drugs, but scientists now know it's more complicated, that genes and the environment also play a role.
"The other thing we've learned in the last 25 to 30 years is that chronic exposure to drugs in the brain produces radical impairments and changes in the neurocircuits of brains, in particular to do with reward and memory and motivation and impulse control and judgement," he said. "So these different cognitive capacities are impaired sometimes radically so that it makes it very difficult for people, even when they want to, to stop."
The word 'abuse' has been dropped from the latest Diagnostic Manual of Psychiatry. The group uses substance use disorder instead, which includes a range of symptoms and levels of use. Kelly has also been trying to create an 'addictionary' of terms that better align with "a public health approach" to addiction. He's also calling for the removal of the term alcoholism, which is no longer used in clinical definitions.
Kelly also argues that certain words like abuse, along with ones like clean or dirty, when describing drug tests, are especially loaded. He has been researching the ways they can even be unintentionally harmful in clinical settings.
"It seems that certain terms like abuse verses a disorder seems, interestingly, to produce more a pejorative and punitive stance, even unconsciously than does the word disorder," he said.
It can induce what he refers to as negative implicit cognitive bias. As another example, he points to the term leper, which can inadvertently lead to negative judgments about people with Hansen's disease.
Several years ago, Kelly tested out the word 'abuse' by giving several hundred mental health specialists one of two scenarios. He asked them whether they thought the person in that story needed to be punished or treated. The scenarios were identical, except for one phrase, the one that described the person.
"What we found was that when people were exposed to certain terms, for example, when people were described as a substance abuser verses having a substance use disorder, people were more likely to view the person as needing punishment as opposed to needing treatment," he said. "And these were doctoral-level clinicians in the field."
He worries that bias could lead to poorer care, even when clinicians are trying to help. They may feel less empathy toward patients, without realizing it, making them more likely to drop out of treatment.
Kelly's concern is starting to resonate. The office of National Drug Control Policy has been striking the word abuse from all of its communications about addiction. The agency is going a step further than Kelly's research, getting rid of words like addict and junkie.
"So, in other words, in describing someone, rather than describing them as the problem - ie: an addict - to describe them rather as a person with an addiction problem or with an addiction condition or with a substance use disorder. A 'person with,' in other words," he said.
A lot of advocates in the addiction world back this "person-first" language. It's an approach that has its roots in the disability community, where people objected to being described as a disabled person verses a person with a disability. Another example would be describing someone as autistic verses someone with autism.
But language is complicated and nuanced. Not everyone agrees on these things. People have different ways they prefer to be identified. Scientists interpret phrases differently, too. And if you kill one word, what should it be replaced with? Some scientists think the word abuse can be useful in distinguishing a severe disorder from a milder one.
Language is contextual, too. When it comes to addiction, how terms are used and the weight they carry may vary, depending on the setting, according to Tom Hill, a senior advisor on addiction and recovery at the Substance Abuse and Mental Health Services Administration.
"Language is always problematic, and it's always confusing. So there's shortcut language that may work in certain contexts but when used in other contexts, if it's negatively based, it doesn't," he said, referring to when 'addict' is used in the context of a support group and how it may mean different things than when a politician says it.
Hill says in recent years, SAMSHA has changed the language it uses in its materials.
"There is not an official playbook, but the language and writing that comes out of SAMSA now is filtered through a process, so that words like abuse and abuser are not used, and terms like substance use disorder and addiction are used," he said.
Hill also says SAMHSA is in the early stages of studying the impact of other terms, like addict, with the National Academy of Sciences.
Taking 'Abuse' out of the language of addiction
Kelly says at least with the word abuse, enough research points to its problems, and he's optimistic about its demise.
"That's the thing about language is that our language does change, it does evolve," he said. "In the mental health field, we have used in the not too distant past terms like lunatic, asylum, drunkard, dipsomaniac to describe people with alcohol addiction, for example. But we don't use those terms now, right? We use things like psychiatric hospital, psychiatric illness," he said.
Last fall, after a lot of back and forth at a meeting of the International Society of Addiction Editors, the group recommended against using the terms substance abuse and substance abuser.
Back in Washington D.C. the other week, where Kelly proposed that the National Institute on Drug Abuse consider changing its name, he acknowledged that even a majority of these thoughtful scientists were in agreement, it's not like they could just go out, get a new sign and hang it on the door.
"It would need an act of congress to change names, which is a pretty big deal to do that," said Kelly.
And going through such "a lengthy and time consuming process" is not something the agency says is a priority right now, Dr. Jack Stein, Director of NIDA's office of science policy and communications said in an email:
"We are extremely sensitive to how language can affect stigma, and make every effort to continually address this in all the content produced by NIDA...NIDA's efforts are currently focused on addressing the field's pressing research needs, particularly those related to science helping to solve the opioid crisis."
Kelly described the discussion that followed his proposal as positive. People went back and forth about the meanings and social weight of different addiction terms. And that awareness, he says, is important. Because the country is struggling to get a handle on a major opioid crisis, and the language people use matters.
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