How astroturfing disease affects patients

One of the top hits that comes up on the Oracle of Googlius for “astroturf” is for the original company, now renamed SYNLawn, but still proudly stating, “We invented synthetic grass,” which is what astroturf is. More recently, this already synthetic term has become a verb, as in “astroturfing.”

My favorite of all credible information sources on the web, Wikipedia, has this to say about it:

Astroturfing denotes political, advertising, or public relations campaigns that are formally planned by an organization, but are disguised as spontaneous, popular “grassroots” behavior. The term refers to AstroTurf, a brand of synthetic carpeting designed to look like natural grass.

I think the readers will recognize a lot of the fabricated causes taking front and center place in today’s political landscape as qualifying for astroturfing.

But what about diseases? Can there be astroturfed diseases? Is it possible that some of the 40% of Americans who have at least one chronic disease are suffering from an astroturfed disease? And is it possible that there are more astroturfed diseases cropping up every day? How can this be? That would be some futuristic dystopia, nothing to do with our reality. Well, bear with me, and see what you think.

A friend recently blogged about something called “hypoactive sexual desire disorder“, affectionally abbreviated as HSDD, lending it that much more medical gravitas, as abbreviations are apt to do. Turning once again to my favorite source of information, here is how it is defined:

Hypoactive sexual desire disorder (HSDD), is considered as a sexual dysfunction and is listed under the Sexual and Gender Identity Disorders of the DSM-IV. It was first included in the DSM-III under the name Inhibited Sexual Desire Disorder, but the name was changed in the DSM-III-R.

Aha, so it is a DSM-IV defined disorder. Let’s see who qualifies (thanks to my friend who is a psychiatrist for this):

A. Persistently or recurrently deficient (or absent) sexual fantasies and desire for sexual activity. The judgment of deficiency or absence is made by the clinician, taking into account factors that affect sexual functioning, such as age and the context of the person’s life.
B. The disturbance causes marked distress or interpersonal difficulty.
C. Sexual dysfunction is not better accounted for by another Axis I disorder and is not due exclusively to the direct physiological effect of a substance (drug of abuse or medication) or a general medical condition (like age).

I especially love the substituted judgment here: “The judgment of deficiency or absence is made by the clinician…” So, ladies, do not try this at home — these people are professionals.

Being that research methodologies are in my blood, I cannot help wanting more precision in order to define the condition. When precision is lacking, as in this “diagnosis”, misclassification becomes a big problem. This, of course, can go either way (that is in favor of diagnosing or away from diagnosing) when the clinician has no preconceived notions about the population, the specific patient, the condition or its treatment. But how often does that happen? All of us walk around with many a preconceived notion, most concealed at the subconscious level, and we make our decisions based on those. And the insidious part is that these preconceptions in medicine can be hijacked by unethical marketing practices.

Remember this story in the New York Times recently, which brilliantly described the arc of manufacturing the market for antipsychotics? Do you think that it is possible for a sales rep to increase the misclassification of HSDD in favor of more non-cases being called cases, so that they can “benefit” from treatment? You bet. My point is that, even if the syndrome is real in a small fraction of the population, the less precisely defined it is, the easier it is to grow the market by classifying even marginal or non-existent cases as disease.

But of course we should not single out psychiatry here. Even in areas with “hard” data, like cardiovascular disease, the thresholds for such quantifiable risk factors as cholesterol and blood pressure keep drifting downward with every new iteration of “evidence-based” guidelines, to the point where we now are coming up with pre-disease nosologies, such as pre-hypertension, pre-diabetes, etc. Whether these pre-diseases result in actual clinical syndromes is quite open to debate, as we are seeing even in the mammography and osteopenia debates. So, even when we complacently refer to precise and objective measures of disease definition vigilance and skepticism are required. However, from the perspective of generating markets, the earlier the disease is defined, the larger the market potential. Thus, misclassification becomes a market strategy. And harms to public’s health increase.

So, is the phenomenon of astroturfing diseases real? You decide. For someone who spends her life worrying about critical illness, it is an absurd, albeit too real, idea. For someone walking in the street who yesterday was healthy but today carries a pseudodiagnosis, astroturfing is all too real. For some unethical manufacturers and clinicians, the proof is in their all too real income. For the rest of the society, we reap what they sow by paying an enormous, and very real, price in human lives, happiness and dollars.

Just as in politics, in healthcare astroturfing represents Orwellian dystopia. We as clinicians, researchers, manufacturers and citizens need to guard against it at all costs, even at the detriment to some of the economic dogmas that make up the fabric of our consumerist society. We can do this through greater emphasis on personal responsibility and communication, as well as better understanding of the nature of scientific evidence. I guarantee that we will not only seem healthier, but we will also be healthier. And perhaps happier too.

Marya Zilberberg is founder and CEO of EviMed Research Group and blogs at Healthcare, etc.

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