Ill-informed opinion, rather than evidence, and an often misguided sense of what is moral shape attitudes to addiction and its treatment. In this fake news era it behoves addiction researchers to take evidence to the public and to governments more than ever before – even if this means navigating the uncomfortable territory between science and advocacy – writes Sally Marlow for The Lancet.
The Narcotic Farm was established in 1935 in Lexington, Kentucky, by the United States Department of Public Health with two aims. First, it was to create a new way of dealing with addiction as an issue of health rather than criminal justice, by offering treatment and rehabilitation instead of punishment and retribution. Second, it aimed to bring together researchers to study addiction in its Addiction Research Center, and to find a cure.
‘Narco’, as it was commonly known, was a noble idea, designed to support men and women convicted of drug-related offences alongside those who made a voluntary decision to commit to treatment.
But being part hospital, part prison, its very existence captured something about the ambivalence of society's attitudes to addiction, not only in the United States but across the world. It rose monolithically out of bluegrass farmland as a reminder to all those who entered that this was a place of incarceration.
Those inside Narco were just as likely to be referred to as inmates, felons or prisoners as they were to be called patients. Further, despite its well-intentioned mission, the Narcotic Farm was established against a backdrop of an increasingly punitive and moralising US drug policy, with the infamous Harry J Anslinger at the head of the Federal Bureau of Narcotics from 1930 to 1963.
Researching addiction questions
This strange hybrid became a place of high hopes and expectations, and those working in the Addiction Research Center foresaw they would find evidence to address some basic scientific inquiries. What is addiction? Why do some people become addicted and not others? How can addiction be cured?
During almost 40 years of existence, the Narcotic Farm hosted tens of thousands of men and women, providing a never-ending supply of research “subjects” with in-depth knowledge and experience of drug use, on which theories could be tested. Researchers observed the behaviour and biological markers of these patients as they were given doses of various drugs and withdrawn from them.
In retrospect, the idea that addiction researchers would find solutions to these large sweeping questions seems naive at best, and hubristic at worst, but while looking for explanations, other questions were answered.
Much of what we know now about the phenomena of withdrawal and tolerance is based on observational studies that took place there decades ago. It was at Narco, for example, that theories of addiction as a conditioned response, or in response to cues, were first noted and the phenomenon of craving was first observed. The end result was that addiction is now recognised as having a chronic and relapsing component.
Pharmacological therapies were also developed: early studies of methadone maintenance treatment for heroin dependence were done there, followed by buprenorphine. Recognising the risk to life of heroin overdose, researchers sought an antidote; more recent work developing naloxone for this purpose stands on the shoulders of research first begun at the Narcotic Farm.
These successes sit alongside an uncomfortable truth about the Narcotic Farm: much of that work was done in ways which are now deemed unethical.
The in-depth understanding of tolerance and withdrawal was based on observations in which patients were in many instances given drugs with which they already had a history of addiction. Researchers were in effect re-addicting those who had come for treatment.
Patients were even incentivised to participate in experiments by being given payment in their drug of choice, which could be banked for later use. Moreover, although there was a process for patients to agree to take part in experiments, many argued that those who had been involuntarily incarcerated could hardly be described as having given informed consent.
In the 1970s, the research at the Narcotic Farm was the subject of the same Congressional hearings called by Senator Edward Kennedy into the ethically unjustified Tuskegee syphilis study. Some of the dubious ethical practices under which research at Narco was done are less well known than Tuskegee but are no less striking – indeed, sometimes incomprehensible when viewed from the perspective of research ethics of today.
The Kennedy hearings were particularly concerned with a series of experiments done in the 1950s on prisoners at the behest of the Central Intelligence Agency in partnership with the Federal Bureau of Narcotics, in which prisoners receiving treatment for addiction problems were administered LSD (lysergic acid diethylamide) and other hallucinogenic drugs.
As a result of the hearings, the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research was formed, and brought with it a new ethical code for research on humans.
Narco as a place to study and treat addiction was closed down in 1974. The building survives today, but as a federal prison.
A paradox
Looking back, we can see that the Narcotic Farm was a paradox. Its Addiction Research Center did some pioneering research work, but great injustices were also committed there. It has been argued that without some of its wrongs, our current knowledge of addiction and how to treat it would not be where it is today.
For research scientists such as myself, however, it is important to remember that many advances in our field have come at an enormous human cost. The Addiction Research Center has been characterised by some as little more than a laboratory where scientists experimented on human lab rats, with little regard for their rights.
Fast forward, and research since the Narcotic Farm still has not found adequate answers to those big addiction questions.
What is addiction? There is no single, parsimonious definition of addiction that satisfies those who need to be satisfied: scientists of all persuasions, clinicians, individuals with lived experience, policy-makers and the general public.
What causes addiction similarly remains complex. Addiction researchers disagree about the relative contributions of the brain, the environment, and learning.
When it comes to why some people become addicted and not others, it is now known that genes and heritability are important, but these are not deterministic, and there is no single gene that is necessary or sufficient for a person to become addicted. It is also known that structural, environmental, and social factors increase vulnerability to addiction, and that genes interact with these factors in a myriad of ways.
In its pursuit of answers, the addiction research community talks about taking interdisciplinary approaches, but as with many research areas, the funding models do not encourage collaboration, and silos abound, with many labs chasing their own predetermined holy grails.
In terms of finding a cure, the one thing addiction scientists and clinicians do seem to agree on is that although addiction can be treated, there is no silver bullet cure. Treatment needs to be specific to the person and take into account not only a person's relationship with drugs but also mental health, experience of trauma, housing and employment situations, structural discrimination, and previous attempts to quit.
We do know more about what sort of treatments work. These include pharmacological interventions to alleviate the symptoms of withdrawal; to act as a substitute for drugs of addiction such as tobacco and heroin; and to reduce craving and, by association, relapse.
Psychological interventions have also been developed and studied, with some success. However, rates of relapse in those who have had or are having treatment remain high, at around 40% to 60%, depending on the drug and the population studied.
Alongside this, one of the largest therapeutic programmes for addiction has had nothing to do with the addiction research community. 12-step fellowships, including Alcoholics Anonymous, Narcotics Anonymous, and Gamblers Anonymous, are grassroots peer-support organisations, founded by those with lived experience, and have enabled millions of people to achieve sustained recovery. However, their very anonymity means they are closed to scrutiny and to study, and their flat hierarchies bring with them a lack of accountability.
Addiction research is now much more likely to be done in the general population or in clinics rather than in prisons – indeed, in some countries it is illegal to do research on prisoners.
The research community has come a long way in terms of the respect and dignity it affords its “subjects”, who now are referred to as participants in recognition of the need to break down the traditional power dynamic between researcher and the person taking part.
Increasingly, research is co-produced by those with lived experience, including at my own institution, King's College London, where an active and independent Addictions Service User Research Group collaborates with researchers from initial stages of a study design to the dissemination of the results.
Despite these advances, addiction remains far from “curable” and in many ways is still pretty much the same beast it was when the Narcotic Farm first opened its doors. There has been the addition of a few more drugs of addiction and some addictive behaviours, such as gambling, to the research canon, but working in this area still involves the same backdrop of confused and ambivalent attitudes.
Despite overwhelming evidence that the so-called “War on Drugs” has been ineffective, most governments and societies are unable wholeheartedly to embrace addiction as a health issue rather than a criminal justice one.
There is insufficient political support for harm-reduction approaches, despite evidence that they work, and the continued tendency towards criminalisation for drug use impacts some of the most marginalised groups in our society.
Ill-informed opinion, rather than evidence, and an often misguided sense of what is moral shape attitudes to addiction and its treatment. Such attitudes are partly fuelled by a media that is more interested in scapegoating and demonising people than in increasing empathy and understanding.
History is supposed to teach us something about the present. Addiction researchers have made some great steps to understand and treat addiction, but when it comes to the wider social and political contexts in which we operate, sometimes it feels the world has not moved on very much at all since 1935.
In this fake news era it behoves addiction researchers to take their evidence to the public and to governments more than ever before, even if this means navigating what is for many of us the uncomfortable territory between science and advocacy.
[link url="https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(18)32831-9/fulltext?dgcid=raven_jbs_etoc_email&code=lancet-site"]Reimagining addiction[/link]
[link url="https://www.bbc.co.uk/programmes/b08k4s1k"]Further listening: Hitting the High Notes, BBC Radio 3 documentary by Sally Marlow[/link]