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Your Pills Are Spying on You

How smart pills and surveillance capitalism threaten the civil rights of people with mental illness.
Pills and drugs

There's a new psychiatric medication on the market called Abilify MyCite. On its own, the drug Abilify is a partial dopamine agonist that has been approved by the Food and Drug Administration since 2013 as an anti-psychotic medication. It's generally prescribed to people with conditions such as such as schizophrenia and bipolar disorder, though questions remain about its effectiveness and the severity of its side effects. The "MyCite" pill, approved just last year, does something new. It contains a digital sensor that tracks whether a patient has ingested the drug, then shares that information with doctors, family, or whoever is programmed to receive it.

The use of Web technology to track medication has been emerging over the past decade or so. The technology has arrived with the usual benefits and risks of the Internet of Things: timely reminders, cool gadgets, vulnerability to hacking, loss of control over one's data, state surveillance. When it comes to a pill like MyCite, America's history of coercive psychiatric medication intensifies the risks. If the medical technology is simply used to help people remember to voluntarily take their pills, so much the better. Alas, that's unlikely to be the case. People with psychiatric disabilities, especially poor and otherwise vulnerable people, are too often forced to choose between mandatory compliance and basic freedom. MyCite makes it easier to demand that people surrender their privacy in order to conform to some artificial idea of normal.

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There's nothing wrong with creating new digital tools to help people keep track of their medication. Lots of folks are disorganized and forgetful and eager for the reminders. I take a daily antacid and often stare at the bottle, trying to remember whether I took it before I had coffee. Non-adherence, as the medical profession refers to it when people don't take the drugs they've been prescribed, is widespread, and its consequences are expensive. Experts estimate that people don't complete medication cycles at least 25 percent of the time, with some estimates rising to 50 percent. When people don't take their medication, their medical needs re-occur or intensify, resulting in an estimated $100 billion per year in otherwise preventable medical costs.

Abilify is the first FDA-approved pill with a tracking mechanism, but it's hardly the first medical entry in the Internet of Things. Medical devices such as insulin pumps, pacemakers, and CPAP breathing devices can all be enabled to report data back to users and medical professionals alike. Given the high-stakes nature of the first two, where insulin use and regulating heartbeats can literally be life-saving, these technological changes make sense on the surface. There have been some problems, though. First, all Internet-enabled tech can be hacked. Last fall, the FDA recalled 500,000 Internet-connected pacemakers over security concerns. Medical device giant Johnson & Johnson warned consumers that its insulin pumps could be hacked. The idea of someone turning off your heart by hacking is the scary stuff of science fiction, and might well be a real threat.

As Abilify MyCite enters the marketplace, though, I'm concerned about more subtle issues. Who controls the data from your heart machine, insulin pump, or CPAP? In 2015, writing in Slate, Hugh Campos outlined the steps he had to take to get access to data from his own implanted heart defibrillator. Campos has since been joined by numerous other security researchers fighting to be able to measure what their own body is doing. People being denied access to their own data isn't just about controlling proprietary rights, but also about commerce and compliance. According to The Journal of the American Medical Association, at least as of 2016, many diabetes and other medical apps offer limited privacy protection. The makers of such apps remain free to sell your medical information.

Meanwhile, CPAP makers claim—just like the backers of Abilify MyCite—that their remote monitoring will help patients stay compliant. Really, though, remote monitoring is a tool to help insurance companies save money at the expense of the consumer: As the Alaska Sleep Clinic says on its blog, "if patients don't meet a minimum standard (usually four hours a night/four days a week) they may ask patients to reimburse the company for the equipment."

The arrival of this data-generating technology in the world of psychiatric medication takes these trends—loss of ownership over medical data, risk of unauthorized medical disclosures, and penalties for failing to comply—and magnifies them. In Nos Magazine, disability rights attorney Shain Neumeier argues that, because of the routine association of mental illness with violence, the general public remains perfectly willing to sacrifice the civil rights of disabled people in exchange for a false sense of safety. Still, freedom is at stake. As Neumeier writes: "The people who will be hardest hit by the consequences of this will be members of other populations that are already disproportionately subjected to coercion and surveillance. ... People who are already institutionalized in prisons as well as psychiatric hospitals would lose some of the few shreds of privacy such settings allow, and proof of medication non-compliance could postpone or prevent their re-integration into the community through parole or discharge." Children, soldiers, and state employees could easily become vulnerable as well. Once MyCite exists as a tool, it's not hard to imagine a judge, police chief, parent, boss, commander, or prison doctor taking control of the data it generates to make sure the pills are taken and using that information to penalize the non-compliant person.

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Bethany Lilly, deputy director of policy and legal advocacy at the Bazelon Center for Mental Health Law, is also worried. Over the phone, she tells me that the decision to approve this specific pill, Abilify, as the first tracker drug is concerning. "It plays into stereotypes about people with mental illness. Our folks don't have worse adherence rates than any other chronic disease population, but we're going to be the first folks to get it because of the history of forced treatment." Lilly notes that, currently, the people with mental illness who are forced into treatment tend to be poor and non-white, evidence that the stigma about mental illness reflects other kinds of inequities in society. Lilly says that Otsuka, the pharmaceutical giant that makes the MyCite pill, is "creating something that is a tool that can be used for involuntary treatment. Forcing someone to take medication is an absolute last resort."

Meanwhile, the side effects can be horrific. Leah Harris, co-founder of Campaign for Real Change in Mental Health Policy, tells me over the phone that "we never ask why the noncompliance" happens when patients don't adhere to antipsychotic drug regimens. "We just slap additional layers of coercion on an already coercive and broken system," she says. Harris wants people to know that our focus should be on developing better drugs, not on "microchipping pills."

"My mother, who died at 46, was coerced," Harris tells me. "[They] picked her up in a van and then forcibly injected the drugs into the body. It's not a microchip, but it's the same idea. She never got better. She was humiliated and shamed every day of her life."

Abilify MyCite is an example of surveillance capitalism, a term coined by Harvard University professor Shoshana Zuboff. Surveillance capitalism monitors human behaviors, tracks them, commodifies them, and then sells the ability to control and predict future behaviors. MyCite extends the reach of surveillance capitalism into the body and the mind, literally tracking whether someone has altered their innate modes of thought. What's more, our ability to track and enforce the ingestion of medication is only going to expand as this technology grows. Will bosses, parents, prison wardens, judges, police chiefs, principals, and other powerful figures be able to monitor whether selected people take their pills? Will insurance companies be able to make coverage dependent on compliance with these drug regimens, the way they already do with CPAPs? What brave new world of coercive medication extends beyond the horizon?

In response, we are going to need an intense focus on protecting these specific civil liberties in order to keep this technology from becoming a tool of oppression. It's not hopeless. We could ensure that the FDA and other governmental bodies rigorously enforce privacy regulations to protect consumers from digital medication monitoring. Given the ongoing patterns of forced medication for people with psychiatric disabilities, alas, it may already be too late.