by Art Levine
These promises come too late for Janette Layne of Charleston, West Virginia. When she last saw her husband Sgt. Eric Layne alive, he had been discharged just two weeks earlier from a VA Hospital unit in Cincinnati specializing in PTSD (similar to the one Tompkins was desperate to enter) and was dozing on the couch with the TV playing while she headed upstairs to their bedroom. Because of his mounting outbursts of rage and paranoia since he first returned from Iraq, the expert psychiatrists at two VA hospitals had been prescribing Layne increasing doses of a drug cocktail for PTSD that included a powerful, risky antipsychotic drug, Seroquel. Although it’s not officially approved for such “off-label” uses, Seroquel is among the most prescribed drugs in its class and at its peak brought in more than $5 billion a year for its manufacturer, AstraZeneca, all the while being linked to side effects ranging from diabetes to sudden cardiac arrest.
Yet even though Eric Layne kept complaining of headaches and tremors—concerns, by the way, that were discounted by the VA medical staff—he also gained too much weight, had trouble breathing and was so over-sedated that, according to his wife, he had become a “zombie.” One month later, he was dead.
“All these doctors and medics and PhDs kept telling us that he was fine,” Janette Layne says of their treatment ordeal. “We trusted the doctors.”
It’s a trust that’s no longer warranted from the families of the more than four hundred combat veterans and other military personnel who are estimated by critics to have died suddenly after being overmedicated with PTSD “cocktails” that included Seroquel and an array of mood stabilizers. Military inquiries so far have largely blamed the seemingly mysterious deaths on suicides and natural causes—or, in a few cases, on some inexplicable “drug toxicity”—rather than looking to the way the government’s own psychiatric practices are distorted by pharmaceutical industry influence. The role that the drug industry has played in these and other needless tragedies has largely been downplayed by the military and the Department of Veterans Affairs, particularly with regard to the secretive payments to VA researchers, the aggressive marketing of antipsychotics drugs for “off-label” uses like insomnia and the irresponsible, fatal use of opiates with chronic pain and PTSD patients.
Indeed, a hunger for profits has corrupted just about every conceivable arena of mental health care, from the overdrugging of foster care kids and the elderly to abusive teen residential facilities. Not only that, it’s been abetted by what this book shows are indifferent professional associations, pharmaceutical-subsidized patient advocacy groups and government regulators that either push a drug-industry agenda or fail to halt what amounts to an epidemic of behavioral health malpractice. Already feeble oversight will be weakened further by a Trump administration determined to roll back regulations on health care and every other industry.
Mental Health, Inc. provides a comprehensive look, told through the stories of those harmed by reckless care, at the most critical mental health abuses and dangerous, ineffective practices—while probing the corporate and government obstacles to providing effective, proven and compassionate care. (The title and spirit of my book have been inspired in part by the book on corporate greed by Morton Mintz, called America, Inc.: Who Owns and Operates the United States.)
Despite these failures, some mentally ill people have won unexpected victories in their lives by getting smart, personalized help from programs that work. You’ll meet in this book a Silver Spring, Maryland, man with schizophrenia who escaped a past stuck in an overmedicated stupor and now succeeds at the corporate job he has held for a decade; and a young college freshman in Portland, Maine, who was startled by emerging hallucinations, but received early intervention so well-targeted and so supportive that she avoided developing schizophrenia at all. Now she works as a psychiatric nurse helping others. Unfortunately, these sorts of valuable programs that helped them—for instance, “supported employment” and those based on the Portland Identification and Early Referral (PIER) model—are threatened either by hostile or inept federal agencies, as well as a chaotic mental health system.
Far more than government apathy or incompetence is involved in creating a mental health field that a presidential commission years ago justly called a “shambles.” It is also largely an out-of-control, profit-driven system. The pages ahead showcase the recent trials and lawsuits targeting providers whose overdrugging or negligence helped kill their patients, and unravel the corporate and government wrongdoing that made possible the deaths of innocent people who just needed some help. The consequences of today’s failed system are best illuminated by the stories of its victims told in the following chapters, as well as by snapshots of corrupt drug industry executives and academic researchers who created fraudulent marketing schemes that still needlessly kill thousands each year with medications.
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DESPITE DECADES OF CRIES FOR REFORM, IT’S REMARKABLE HOW LITTLE has fundamentally changed in how we treat people with serious mental illness. Maltreatment of the severely mentally ill has been around almost as long as mental illness itself. So it’s worth reviewing, in brief, the appalling story of how mental health treatment and research went off the rails before reformers and concerned citizens can start trying to fix what’s wrong now.
Much of the response to madness has been driven in part by the fear and confusion felt by both the medical profession and the public over severe mental illness, especially schizophrenia. Although increasingly viewed by experts as a syndrome involving various “neurodevelopmental” disorders that manifest differently, schizophrenia is marked in part by paranoia, delusions or hallucinations that make it hard for sufferers to distinguish between fantasy and reality. Except for a few experiments in compassionate care in late eighteenth-century France and in American Quaker communities in the early 1800s, the drive to control and manage the mad can be seen everywhere—from the chained lunatics of the bedlam era of the 1700s in Europe and the US, straight through to the shock therapy, insulin injections, ice baths and lobotomies common in modern America until the mid-1950s.
This sordid record was described most notably in Robert Whitaker’s Mad in America, but its spirit has been carried forward into the pharmaceutical era, augmented by greed, deception and fraud. That’s a theme underlying the books of Whitaker and other leading critics of the pharmaceutical industry and drug-oriented psychiatry, such as Dr. Marcia Angell, journalist Melody Petersen, Dr. David Healy and Dr. Ben Goldacre.
For mentally afflicted people in the “snakepit” hospital era of the 1940s and ’50s, insulin injections and other nominally “therapeutic” treatments were the norm until the spread of Thorazine and other FDA-approved antipsychotics originally developed for their ability to limit movement while patients remained awake. After being synthesized by French chemists in 1951, the drug chlorpromazine, better known as Thorazine, was hailed as a “medicinal lobotomy” and had calming effects on surgery patients and psychotics. But, as Whitaker notes, the drug’s traumatizing impact started being downplayed in 1954, when marketing efforts in the US promoted Thorazine as a “wonder drug” that could essentially cure madness.
The hype surrounding the original antipsychotic drugs helped lead to the closing of many mental hospitals, leaving hundreds of thousands of severely mentally ill people out on the streets, without any better or meaningful alternatives. These trends were further fueled both by scandals about squalid mental hospitals and new legislation in the 1960s—which included Medicaid and President Kennedy’s mental health act—that spurred the closing of state and county mental hospitals. In the mid-1950s, there were close to 560,000 public psychiatric beds available and by 2016, there were less than 40,000 such beds. When all public and private psychiatric beds are counted, that still amounts to less than 70,000 beds—even though nearly 400,000 seriously mentally ill people are incarcerated in jails and prisons on any given day. Essentially, then, ten times more mentally ill people are inmates than are patients in public hospitals. At other times, they may join the r
anks of the people with severe mental illness who make up a third of the nation’s 550,000 homeless counted on a single night in January 2016.
Others are confined with nearly 700,000 or more mentally ill people in poorly monitored nursing homes and assisted living facilities (ALFs). Nearly once a month, The Miami Herald reported in 2011, mentally ill and elderly residents were killed through abuse and neglect in the state’s ALFs while law enforcement and state regulators looked the other way. Outside of some facilities closed following media investigations, most states have done little to crack down on these homes.
The newer generation of antipsychotics developed in the 1990s, such as Zyprexa, Risperdal and Seroquel, was supposed to usher in an era of quality care, assuming treatment could be obtained. With their potentially fatal side effects buried, these drugs were promoted as having none of the neurological side effects of the earlier drugs. The “miracle” pills were heavily marketed to virtually any agency or doctor treating people with almost any form of mental illness or distress.
The exaggerated and false claims made on behalf of these drugs by drug companies weren’t fully debunked until devastating independent government-funded tests, known by the acronym CATIE (Clinical Antipsychotic Trials of Intervention Effectiveness), were published in 2005. They publicly branded the newer antipsychotics as not any safer or more effective for schizophrenia than the older medications.
In fact, even the early tests for those newer antipsychotics (known as “atypicals”) not only risked lives, but were essentially rigged against the older ones. The original schizophrenia trials did this, in part, by ramping up dosages of the old antipsychotics being studied to dangerous levels and inducing psychotic relapses through the sudden withdrawal of the patients’ current meds before those in the experiments were given placebos. The suicide rates in these early trials were two to five times higher than the norm for people with schizophrenia. The experiments’ dangerous subterfuges were exposed in a 1998 Boston Globe series led by Whitaker and in documents unveiled in lawsuits against drug manufacturers. The diabetes, weight gain and cardiac risks posed by the new antipsychotics, joined by the potentially higher risk of suicide posed by antidepressants for some youth, were well-hidden for years.
But even as drug companies have paid out $35 billion to federal and state governments in fines and settlements over the last twenty-five years for the alleged illegal marketing and sale of psychiatric and medical drugs alike, according to Public Citizen’s Health Research Group, not much has changed in terms of either scientific discovery or ethics. Those penalties are dwarfed by the $711 billion in global net profits the pharmaceutical industry earned in just one decade. At least eight major drug companies, including AstraZeneca and Pfizer, had to sign two or more agreements with the federal government promising to never illegally market their drugs again. But findings of the Health Research Group and recent lawsuits show those agreements to be poorly enforced or altogether ignored. AstraZeneca, for example, shelled out nearly $2 billion in legal fees, penalties and settlement payments over government allegations of illegal marketing of Seroquel and the hiding of health dangers alleged in 26,000 liability lawsuits. That was a pittance compared to the more than $5 billion it earned, as noted earlier, in its best-selling years.
Even after all this research and controversy, neither the drug companies nor federally funded academics are significantly closer to finding definitive, overwhelmingly effective and safe medications to treat mental illness. Scientists also still haven’t solved, despite promising hints from DNA and brain research, the underlying scientific mystery of madness. As the then-director of NIMH, Dr. Thomas Insel, observed in a 2010 article in Nature, “We still do not have a basic understanding of the pathophysiology of the disorder and therefore lack the tools for curative treatment or prevention needed for most people with schizophrenia.”
Another sort of “scientific fraud” (Whitaker’s term) is the development of corporate-funded pharmaceutical solutions for mental illness that rely on the cherished “chemical imbalance theory” for their claims. This posits that depression is caused by insufficient serotonin levels and that schizophrenia is caused by excessive amounts of dopamine. Leading medical journals have largely debunked this theory since the 1970s for schizophrenia (and for depression by the late 1990s) because researchers have shown that unmedicated people with these illnesses didn’t have different levels of these brain chemicals than “normal” control subjects. Despite being widely discredited, this hasn’t stopped pharmaceutical companies from marketing the theory as a solution to help boost drug sales. (The contentious dopamine argument, though, is periodically revived by some respected scientists claiming to offer dramatic new evidence for its validity.)
Many people, of course, have been helped by both antidepressants and antipsychotics regardless of how they work. Elyn Saks, a professor of law at the University of Southern California and author of the memoir The Center Cannot Hold: My Journey Through Madness, has praised the value of Clozaril and, earlier, Zyprexa in her life. After taking Zyprexa for the first time, she writes, “Thanks to the new chemicals coursing through my body, I experienced long periods of time in which I lived as other people did—with no psychotic thinking at all.” Researchers, though, continue to debate the validity of studies that seemingly show the effectiveness—or ineffectiveness—of psychiatric medications.
By the time the independent CATIE findings appeared in 2005 deriding the superiority claims made for drugs such as Zyprexa, Risperdal and Seroquel, the marketing gold rush for the new antipsychotics was too successful to be stopped and the audience for these drugs had spread far beyond schizophrenics. (A note on language: Terms such as “schizophrenic” and “patient” are often seen as stigmatizing, but they’ll occasionally be used for ease of reading.) With or without FDA approval, they were now being hawked for use with almost anyone with problems, including moody toddlers, stressed-out veterans and cranky seniors in nursing homes. A co-researcher on the major CATIE study, psychiatry professor Dr. Robert Rosenheck of Yale University, told me, “By that time, it was Katy bar the door!”
The legacy of corrupt medication research and mistreatment of the mentally ill—and troubled teens—chronicled over the years by critics of the drug industry, abusive youth treatment and psychiatry lives on today in dangerous, sometimes life-threatening, care.
In contrast to such concerns, mainstream psychiatry’s most influential leaders, such as the former American Psychiatric Association (APA) president, Dr. Jeffrey Lieberman, have proclaimed that psychiatry has been “reborn” due to the introduction of what they say are safe and effective new medications. But they overlook that callous, even fatal, treatment is not just ancient history from the bygone era of hospital “snakepits.” Dangerous prescribing patterns, for instance, have generally worsened in the years since the well-publicized death of an overmedicated four-year-old girl named Rebecca Riley in a Boston suburb more than a decade ago. There has been no meaningful reform of residential treatment abuses for decades, either, even after nearly ninety reported on-site teen deaths in the last fifteen years.
Beyond just chronicling the disastrous human impact of a failed and misguided behavioral health care system, this book also tells the dramatic David vs. Goliath stories of a few brave reformers who have taken on the health care and drug companies that have so warped treatment. These include whistleblowers such as psychiatrist Dr. Stefan Kruszewski, a consultant to the Pennsylvania welfare department, who was fired after reporting the deaths of kids who were killed by psychiatric drugs nearly fifteen years ago, and who later became part of Department of Justice settlements that forced $2 billion in settlements from two major drug companies. You’ll also see a modern Profile in Courage in Allen Jones, a dogged investigator for Pennsylvania’s Inspector General’s office who was fired and then worked as a bricklayer after uncovering a massive scheme by Johnson & Johnson to hawk its drug Risperdal by having corrupt Medicaid officials across the country buy and promote t
heir drug with phony prescribing guidelines. Jones’s findings later led to a $158 million settlement by Johnson & Johnson with Texas that netted him about $20 million while laying the groundwork for a $2.2 billion criminal and civil settlement in 2013, one of the nation’s largest health-care fraud cases.
Equally important—but often overlooked—are pioneering researchers and clinicians who are judiciously using medications when needed, including antipsychotics in low doses and increasingly for relatively short periods, as part of more comprehensive approaches that involve the support of family members and the promotion of independent living. They’re challenging outmoded, drug-and-sedate practices that leave 90 percent of people with serious mental illness too disabled to work.
Just as troubling, drug-based outpatient Medicaid programs are so risky and ineffective that people with serious mental illness receiving treatment now die twenty-five years earlier than the average American. “This is a higher death rate than experienced currently by persons with HIV and on a par with sub-Saharan Africa,” said Dr. Joseph Parks, then the medical director of the Missouri Department of Mental Health. According to Parks’s recent congressional testimony, 80 percent of the deaths are due to illnesses such as diabetes and heart ailments that can be worsened by antipsychotic use.