HIV and the Disease Model
Ever since Benjamin Rush asked why there were people living in poverty and identified the cause as the consumption of alcohol leading to the disease of addiction, proponents of that said disease have always maintained its primacy. Addiction is the cause and not the symptom. If someone walks into a doctor’s office with a cirrhotic liver, the cirrhosis was caused by the disease of addiction, specifically alcoholism.
In this roundabout way, addiction was the cause of death in those who suffered (untreated) from the disease. Lung cancer, overdoses, strokes, and any number of drug-exacerbated deaths could be traced back to the addiction underneath. And then came AIDS.
While most HIV infections were due to sexual intercourse, the virus was also spreading rapidly through what has become known as the intravenous drug user (IDU) community. But, unlike diseases such as cirrhosis and lung cancer, the disease was not correlated to the length or breadth of intravenous drug use. A person need not be a long-term user, or even fully addicted, to contract the disease.
Now, physicians were faced with a disease that when it was correlated with addiction, took primacy. How could you say that addiction was the underlying cause of HIV/AIDS in a person whose use did not meet the criteria of addiction? How could you rationalize primarily treating addiction when the infection was not correlated to the actual use of the drug?
In other words, a person could stop using and the disease would not be arrested. This was in contrast to diseases like cirrhosis, in which getting the addiction under control was the first step in treatment. While limiting drug use after HIV infection would help, it was not necessarily a driving factor in the status of the infection. The status of the infection was decoupled from the use of drugs in a way that drug-use incurred diseases like cirrhosis, lung cancer, or chronic obstructive pulmonary disease (COPD) could never be.
Inherent in this anomaly was another issue that made physicians, care givers, and concerned citizens had to grapple with. While the idea of endogenous addictiveness in drugs such as heroin lives on to this day, the prominence of addiction diminished in comparison to the effects of HIV infections.
Temperance culture wants to believe that we should do anything we can to stop someone from taking that first dose of an endogenously addictive drug. We prohibit its use, we throw its dealers into jail, we punish those who possess it, we even coerce those who are suffering from addiction to it into treatment.
These prohibitions are placed on paraphernalia as well. Until this century, access to syringes had been made difficult by such regulations as only allowing people with a prescription to purchase them. This lack of access helped to drive IDU-related HIV infections by forcing those who used IV drugs to reuse, and share, syringes. The lack of access to clean syringes was the driving factor in why some people would get infected prior to ever becoming addicted. Of course, it must be said that those who were addicted had an even greater chance of becoming infected. But contracting an IDU-related illness would lead to an even more difficult road to recovery.
These contradictions regarding HIV infection caused many people, especially those in human and health services, to being questioning cultural norms around addiction. These questions led to cracks in the façade of America’s ideology related to treating those who use drugs.
Did it make sense to place prohibitions on syringes, knowing full well that people were still using IV drugs? And if addiction causes uncontrollable use, and our goal is to help people rehabilitate from addiction, does it make sense to create more dangers for those suffering from addiction? People were still getting syringes regardless of the prohibitions placed on them. Only those syringes were already used, or shared, or dull enough that using them could lead to larger wounds prone to infection.
It started to make less and less sense to keep those prohibitions going. The cracks in the façade also concerned the nature of addiction itself. If addiction is not always the primary disease related to drug use, could addiction be something else? Could it be a part of, maybe a symptom, of a more complex issue?
People took these questions to heart and began attempting a new approach to drug use and drug users. They bought syringes in bulk and handed them out on the street corner, sometimes asking for the used syringes to dispose of them. Initially, these efforts would usually end up being harassed by authorities. In response, concerned citizens, and even drug users themselves, started to organize their communities to fight for humane treatment.
Following in the footsteps of foreign groups such as the Dutch “junkiebond,” organizations started forming in New York, Chicago, Philadelphia, and other major cities. With this underground movement started growing, it needed to identify unifying theories, and a new name.
The Birth of Harm Reduction
“Despite the apparent contradiction between viewing the drug user as a criminal deserving of punishment and as a sick person in need of treatment…the ultimate aim of both [criminalization and the disease model] is to reduce and eventually eliminate the prevalence of drug use by focusing primarily on the drug user….Harm reduction, with its roots in pragmatism and its compatibility with the public health approach, offers a practical alternative to the [criminal] and Disease models” – Alan Marlatt, Harm Reduction, 1998
It is interesting to note that while the disease model of addiction was an invention originally used in early American public health, it eventually came to be seen as incompatible with the contemporary public health approach. As is evident from the name, the goal of harm reduction is not to eliminate drug use but to eliminate the harms associated with drug use. As was being seen during the HIV/AIDS epidemic, many of the harms associated with drugs (overdose, jail time, poverty) were very much rooted in policy choices rather than in the nature of the drugs being used, or even addiction in general.
In the 200 years between Dr. Rush’s initial implementation of early public health initiatives and the beginning of the HIV/AIDS epidemic, public health practitioners started to focus more on systemic analyses rather than revival tent speeches. These systemic analyses showed that the assumption of endogenous addictiveness within the disease model, and the criminalization of drug use that followed, could not account for non-problematic drug use, racial disparities in the treatment of drug users, or that inherent dissonance between the criminal drug user and the sick addict.
While the established order of the U.S spent the ‘80s trying to entrench the criminalization/disease model, early harm reductionist scholars sought out materials that could help explain these paradoxes. And as we reviewed in Part 5, there were plenty of materials that supported, at the very least, quite a different approach than that of the current system.
Stanton Peele’s works, which we reviewed in Part 5, would be incorporated into the work of Alan Marlatt, a leader in the Harm Reduction movement, and Patt Denning, the creator of what she called “Harm Reduction Psychotherapy.” The Lee Robins Vietnam study would be passed around message boards and listservs during the early days of the internet. Bruce Alexander’s studies became regularly read, especially beyond the boundaries of the United States. He was even chosen as one of the principal investigators (PIs) of the 1995 World Health Organization (WHO) Cocaine Research Project.
The results of the study that was released matched the views of Peele, Robins, Alexander, and others, even though Alexander was only one of 21 PIs. Cocaine use was found to exist on a spectrum, with occasional use “not typically [leading] to severe or even minor physical or social problems.” In essence, it contradicted the disease model’s story of endogenous addictiveness. In response, an American representative to the WHO Assembly vetoed publication of the study, even threatening to pull funding from the WHO if their researched continued to produce results that contradicted the drug policies of the United States. If you would like, you can now find the study… on WikiLeaks.
The Harm Reduction movement would grow on through the ‘90s and start to enter the mainstream by the end of the century. Needle exchange sites would move from tables on street corners into health departments and mobile units. New drugs were being tested to help with addiction, whether blocking drugs from working (like Naltrexone does with opioid/ates) or filling the physiological need (such as buprenorphine) so a person can get a controlled dose and maintain their livelihood, expanding a harm reduction-adjacent tool known as “Medication Assisted Treatment” (MAT).
Many of the group’s slogans and ideals were adapted into the mainstream, such as the idea of “meeting people where they’re at.” However, the old ideas were still firmly hegemonic, leading to confrontations that are ongoing even today. In many ways, those events in 1995 around the WHO cocaine research program were some of the first salvos between the American addiction-treatment/drug-policy establishment and the Harm Reduction upstarts.
In Part 8, we will review how these dissonant frictions have played out in the last couple decades, with offshoots and other alternatives popping up. We will also set the stage for how this has all culminated in our current overdose crisis.
Editor’s Note: All blogs in this series are available to read here.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.
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