If neurochemistry can be thought to have a cruel side, it is evidenced in anosognosia. This loathsome side-effect of severe mental illness accompanies about fifty percent of all cases. As the link explains, it renders its victims incapable of understanding that they are afflicted, and prompts them to strongly resist doctors’ efforts to medicate them and, in cases of active psychosis, commit them to hospital treatment.
My family is acquainted with anosognosia and its lethal power.
Our younger son Kevin almost certainly was a victim of this ride-along predator, and it cost him his life. He accepted psychiatric treatment and medications for most of the three years after he was diagnosed with schizophrenia, yet never acknowledged the disease itself, insisting that it was merely a “condition.” Near the end, after he had been re-diagnosed with schizoaffective disorder he renounced medication of any kind. He hid the pills that we continued to insist he take, and committed suicide just days before his twenty-first birthday.
Kevin’s older brother Dean, stricken a few years after his sibling’s death, has been more fortunate. An enlightened psychiatrist observed Dean’s own resistance to intervention, and turned it to my son’s advantage: In brief, “Report to a clinician for a monthly antipsychotic injection, or be legally hospitalized when the inevitable psychosis erupts.” Dean has taken this carrot/stick choice seriously, and has significantly improved from his psychotic depths.
Now comes medical science (via the pharmaceutical industry) with a product designed to defeat anosognosia. The Food and Drug Administration has approved the digital modification of a popular oral medication, Abilify® (Aripiprazole, manufactured by Bristol-Myers Squibb). As explained in this New York Times story, each pill will be equipped with a digitalized sensor that can transmit electronic data to doctors and family members, reporting whether and when the patient took the medication.
The device will surely be welcomed by parents who have exhausted themselves begging in vain for their children to accept professional intervention, and watched helplessly as their children have refused, and deteriorated into deep psychosis, and sometimes, as with Kevin, death.
My own instinct (naturally) is to celebrate this promising solution to a scourge that would be called “evil” if there were sentience behind it. Yet reason tells me that celebration is premature.
An obvious roadblock to the product’s success is that those who most need it may not take it. If anosognosia leads SMI sufferers to resist acknowledging their illness, why would it not lead them to reject a medication that treats a “nonexistent” illness? (It should be noted that the digitalized medication will also be marketed to older sufferers of various discomforts who tend to forget taking their meds.)
Another barrier is popular distrust–legitimate distrust, to an overwhelming extent–of Big Pharma itself. The distrust has been earned.
Bristol-Myers Squibb is a part of a massive industry that has recently been rated as the second-most hated in America. (The top pariah varies from website to website. The far-flung electronic communications industry is often the No. 1 contender, or nolo contenderer.) Pharmaceutical companies raked in a composite global revenue of more than one trillion dollars in 2014. This ongoing bonanza has made them virtually impervious to the restraints of the law. In 2012, for instance, GlaxoSmithKline paid the U.S. Department of Justice three billion dollars in a false-claims settlement, the largest in the long and bloated history of penalties assessed Big Pharma. Bristol-Myers Squibb’s history of producing Abilify® has been tainted with lawsuits: the watchdog organization drugwatch reports that as of September, 365 actions were pending against the company. Most of them charged that Abilify’s® side-effects include compulsive tendencies toward gambling, eating, shopping and sex.
Big Pharma’s excesses are making headline news, and disrupting America’s social fabric, to this very day. The October 30 issue of the New Yorker carries a bold and searing investigative essay by the writer Patrick Radden Keefe. Keefe’s immersive journalism meticulously lays out the chain of greed, recklessness and “ruthless marketing” that led to our present opioid crisis. Keefe trains his sharp lens on the family of multi-generational philanthropists and drug entrepreneurs, the Sackler family, private owners of Purdue Pharma, which has built them a net worth of thirteen billion dollars, and which is responsible for the prescription painkiller OxyContin. OxyContin’s active ingredient, as most people now know (many of them through catastrophic experience) is oxycodone, a chemical similar to heroin.
Keefe reports that “Since 1999, two hundred thousand Americans have died from overdoses related to OxyContin and other prescription opioids.”
Chapter 15, “Antipsychotics,” in my book NO ONE CARES ABOUT CRAZY PEOPLE, covers the era of Big Pharma from the introduction of Thorazine in 1954 through our present time. The saga is one of proliferating medications, global expansion of companies, almost inconceivable profits, false claims, hidden or downplayed side-effects, and a corporate culture whose manifest amorality was damningly characterized by a former insider, quoted in the chapter, as fulfilling “the criteria for crime in U.S. law.”
Given the details that I have amassed, in this essay and in NO ONE CARES, covering the nearly 70 years of depredations that make up the worst of Big Pharma, it may seem surprising that I do not, out of hand, dismiss the introduction of digitalized Abilify. And the entire universe of antipsychotic pharmaceuticals along with it.
The reason I do not is at once simple and complex: many of them work. Or work for some patients, if not others. Or work in spite of their problematic side effects. Or work until they don’t work. Our vexed universe of care for the seriously mentally ill, even at its best, remains enshrouded in mystery, incomplete science, and human failing.
I believe that until the day that an infallible cure arrives, the advocates of intervention (including conditional support for new products such as digital Abilify, and strong support for laws that ease intervention’s barriers) must acknowledge that we take our stands in a world of risks. Some of the risks we advocate might result in more harm than good, or in harm, period.
But I also believe this: that the biggest risk of all is doing nothing. For this way lies madness.