A Tale of Two Codices: the DSM, ICD and Definition of Mental Illness in America

Last spring, the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, referred to as the DSM-V, was released. It generated a reasonable amount of clamor due to various controversial changes, including but not limited to adding an extreme form of PMS called premenstrual dysphoric disorder, collapsing Aspergers syndrome into the larger category of autism spectrum disorder, and decreasing the threshold necessary to diagnose adults with ADHD. As healthcare is currently dominating the news, this is a crucial moment to refocus on what the DSM-V means for healthcare providers and insurers. Somewhat surprisingly, the short answer is absolutely nothing. Although the DSM tremendously influences the treatment and public perception of mental health, it has gained this undue sway without ever being made the official diagnostic manual of the United States.

Ever since the Health Insurance Portability and Accountability Act (HIPAA) of 1996, billing an insurance company for treatment of a given health condition requires that the condition be identified to the insurance company by a code. Although the DSM provides codes for each mental disorder, the HIPAA actually requires ICD codes – the International Classification of Diseases designations produced by the World Health Organization – for billing. The ICD encompasses diseases of both body and mind and does not contain descriptive criteria of symptoms that help determine a diagnosis. The ICD is thus more of a list than an instructive manual to help determine diagnoses. Members of the WHO must use the ICD to communicate globally about disease, death, and public health concerns. Despite the United States’ membership to the WHO and official adherence to the ICD, the American Psychiatric Association maintains that the mental health diseases listed in the ICD should be supplemented by the extensive diagnostic criteria of the DSM.

However, this rhetorical division of codification versus diagnosis obscures the crux of the difference between the ICD and DSM. The APA’s website notes that the World Health Organization’s “primary focus for the mental and behavioral disorder classification is to help countries to reduce the disease burden of mental disorders”. Thus, they imply that the intention behind the DSM can be defined in opposition to the ICD’s conservative mission. They also state that the ICD is distributed “as broadly as possible at a very low cost” while tellingly noting that the DSM “generates a very substantial portion of the American Psychiatric Association’s revenue”. Further, the DSM revision task-force has been shown to have extensive financial connections to pharmaceutical companies: in 2009, three researchers reported to the New England Journal of Medicine that 68 percent of the DSM-V task force reported personal ties to the pharmaceutical industry. The APA attempted to address this by requiring that the panel members have no more than $10,000 annual income from pharmaceutical sources at their time of appointment, but this did not guarantee that the income did not increase over time and additionally overlooked other economic incentives – such as grants to university labs with which panelists are associated- that could go undeclared.

When the DSM-V rolled out last spring, vocal critic Dr. Allen Frances, who chaired the revision task-force of the DSM’s fourth edition, claimed it would turn “diagnostic inflation into hyperinflation and exacerbate the excessive use of medication”. His contention is that this new revision lowers thresholds for diagnoses of mental illness further than the fourth edition. Dr. Frances fears this sort of increased pathologization could induce “the mislabeling of potentially millions of people who are basically normal”.

The answer is that while ICD codes are ultimately used for billing insurance agencies, the DSM provides conversions to ICD codes. Thus a medical professional can diagnose, prescribe a drug, and bill an insurer all without even being aware that the ICD is the official code system. This is not a matter of interchangeable semantics, though, as the two systems have far from a one-to-one correspondence between disorders. The APA points out that “it is occasionally necessary to use the same [ICD] code for more than one disorder”, meaning that several DSM disorders are compiled under a single ICD code. This causes the definitions of mental illnesses to be distorted or inflated between the two systems.

In addition to increasing the number of DSM disorders encapsulated by one ICD disorder, another method of increasing pathologization becomes evident in an FAQ to help doctors to translate their DSM diagnoses to ICD billing codes. While the DSM generates specific disorders, such as “social (pragmatic) communication disorder”, “disruptive mood dysregulation disorder” and “binge eating disorder”, their corresponding ICD codes are for disorders whose ICD labels are “other developmental disorders of speech and language”, “other persistent mood disorders”, and “other eating disorder”. Because of this, the DSM is able to circumvent the more conservative ICD criteria by overloading each ICD definition or elaborating on the “other” category of each disorder.

Although it may seem harmless for the APA to supplement the diagnoses of the ICD, it becomes more problematic when one of the core missions of the World Health Organization – “setting norms and standards” in diagnoses and healthcare – is taken into account. The ICD’s function as a global standard is not empty rhetoric from its producers; it is overwhelmingly more popular worldwide than the DSM. According to a study conducted by the World Health Organization across 44 countries, more than 70 percent of the responding psychiatrists use the ICD rather than the DSM. In creating a set of standards that progressively pathologizes more of the population, the United States is pulling away from the worldwide standards in an entirely undesirable form of exceptionalism.

Motivations for this push can be ascribed to pharmaceutical companies who have been known to invest huge amounts of money to make sure their product is widely distributed. Beyond simply looking at the Big Pharma money in the pockets of the DSM-V task-force, pharmaceutical manipulation of the DSM can be demonstrated in case studies, like the one highlighted in Academe magazine. Author Lisa Cosgrove, a research fellow at the Edmond J. Safra Center for Ethics at Harvard, describes how the pharmaceutical company Eli Lilly argued for the use of their overwhelmingly popular antidepressant, Prozac, to treat premenstrual dysphoric disorder (PMDD). Proving a new use for the medication allowed them to extend their about-to-expire patent, thus maintaining sole rights for its manufacture and sale. The FDA approved this new use for Prozac, and Cosgrove argues that their approval hinged on the DSM’s “subtle but key” implicit legitimization of a “check-list” approach to creating new diagnoses. Cosgrove’s 2010 article did not foresee that by 2013, PMDD would be a new addition to the DSM-V. Today, a disorder whose diagnosis is based purely on a check-list of symptoms without consideration for the nuanced nature of mental illness has been cemented by the DSM. The DSM’s role is no longer “subtle” but incredibly blatant in legitimizing a disorder whose psychotropic treatment is a cash cow for pharmaceutical companies.

This wide-ranging influence begs the larger question as to how the United States became attached to a diagnostic manual so vulnerable to moneyed interests. Neuroscientist and neuropsychiatrist, Nancy Andreasen, who has received the National Medal of Science, provides a potential answer in her article, “DSM and the Death of Phenomenology in America”. She argues that the United States’ early, over-eager embrace of Freudian psychoanalysis, which eschews diagnosis and classification and mostly discounts patients’ self-reported symptoms, prompted dissidents to provide a more clear-cut, standard set of symptom-based criteria. In 1980, their revision of the 38-page DSM-II turned the DSM-III into a 295-page tome. The creators of the DSM-III emphatically warned that the manual was not entirely backed up by empirical data and underlined the “importance of going beyond DSM criteria” in constructing diagnoses. However, it became an enormously popular commodity for “anyone with any connection to psychiatry”. Both it and its successors have been “universally and uncritically accepted as the ultimate authority on psychopathology and diagnosis”. Viewed in the context of a larger reaction to the indefinite science of psychoanalysis, the impulse towards a strict, simple set of symptoms that determine diagnoses has an evident appeal. However, its reliance on a set of criteria with a lack of data or empirical evidence would never be regarded as scientific or authoritative in any other field.

Even though the DSM has no legal foundation in the United States, increased pathologization is a conspicuous national phenomenon. Mental illness disability rates doubled between 1987 and 2007, rates of ADHD diagnoses went from less than 5 percent in the early 1990s to 11 percent in 2013, and children being treated for bipolar disorder increased forty-fold between 1994 and 2003. In a worldwide survey, the average mental illness rate was around ten percent while the rate in the Unites States was 26.4 percent. That the use of the DSM is not codified is a good thing, but also a frightening testament to the power of habit. If opting out of using the DSM has always been an option, what would it take to make mental health care professionals stop?

There is no short answer to this given the degree to which drug companies are enmeshed with psychiatry in general. To wit, of the top twenty-two doctors who have received most money from drug companies, eleven of them were psychiatrists or neurologists. Additionally, pharmaceutical companies are an active presence at the annual APA meeting in Philadelphia, both in programming and on the exhibit floor. Although nothing legally compels doctors to adhere to increasingly wide standards of pathologization, it would appear that only legal means would be able to retrench the influence of economic forces that encourage a continuation of this trend.