Mental Health Inc

by Art Levine

  To Tamara Sale, director of care for EASA, both of the early psychosis approaches complement each other and have value. But she points out, “NIMH has put so much emphasis on the RAISE project because there’s all this investment behind it”—over $20 million.

  Sale has found that the pre-psychosis program, shaped by her group’s involvement in the Robert Wood Johnson six-city study, has important benefits that can’t be overlooked in the rush to support and promote the RAISE model. Once a person develops schizophrenia, as opposed to preliminary hallucinatory symptoms, she points out, “They are at extremely high risk of adverse events such as legal involvement, accidental death or involuntary hospitalization.”

  NIMH, though, dismisses McFarlane’s work (and virtually all pre-psychosis research in this field) as poorly designed, purportedly because they don’t meet the “gold standard” of a randomized clinical trial with exactly matched control and experimental groups. These arcane statistical issues may appear dry, but they’re worth knowing if the federal government has in fact decided to cut off all funds for using the pre-psychosis model in the field, thus depriving people of needed care. An NIMH spokesperson said in a statement, “Set-aside funds should be reserved for interventions shown to improve outcomes in First-Episode Psychosis.” Yet there are at least a dozen worldwide, rigorously controlled studies with an experimental and a “control” group—but none in the United States—that show that the use of pre-psychosis psychosocial interventions can cut the risk of a psychotic breakdown by 50 percent. That’s what the medical literature shows, according to studies sent to me by the world’s pioneering expert in this field, Australian researcher Dr. Patrick McGorry, executive director of Australia’s National Centre of Excellence in Youth Mental Health. McGorry, himself a recipient of a $6 million NIMH grant to study non-drug treatments on this population, says, “I guess their attitude is if it didn’t happen in America, it doesn’t count.”

  McGorry and McFarlane share a philosophy of focusing more on the early stages of mental illness, rather than waiting for advanced or fatal outcomes. That approach helped save the mind and possibly the life of Tiffany Martinez, who got involved in the McFarlane program when she was in college when the program was still based primarily in Portland, Maine. She got help early that allowed her to bring under control the scary symptoms of shadowy figures and strange voices haunting her—and move on with her life. Today, at twenty-eight, she works as a psychiatric nurse practitioner helping others struggling with mental illness. “They really took their time with me,” she says gratefully of the staff of the Portland Identification and Early Referral (PIER) program she learned about in college.

  Unfortunately, when Tiffany tried to gradually go off her psychiatric medications with the advice of the PIER staff, some of her crazed and depressed thinking returned. Eventually, aided by cognitive behavioral therapy that helped her challenge those thoughts, she graduated college in 2008 and weaned herself off all psychiatric medications. “I believe in mental wellness,” she says, staying active and healthy by lifting weights, getting enough sleep and having a steady routine that includes caring for her two dogs.

  She argues, “There are early symptoms of psychosis and manifestations you can’t ignore. If you can get someone trained to assess you, you’re better off getting the specific help you need.”

  CHAPTER 17

  Putting People Before Big Pharma: Overcoming the Barriers to Recovery

  “RECOVERY” FROM SERIOUS MENTAL ILLNESS IS REAL: THE ABILITY TO manage otherwise disabling conditions and to live a meaningful, independent and fulfilling life involving work, relationships, a stable home and ties to the community should be available to all. It’s still hard for many people to believe that skilled early intervention or even a supportive family environment can potentially help some people from developing full-blown schizophrenia, bipolar disorder and other devastating mental illnesses. But it’s worth recalling that even the likelihood of a genetic predisposition underlying these “biosocial” illnesses doesn’t doom people for life—and serves to underscore the importance of traumatic life events and social conditions in shaping mental illness. Unfortunately, because 75 percent of psychiatric illnesses develop by age twenty-four, and two-thirds of children with mental health problems receive no treatment at all, millions of people grow up struggling with disabling mental illnesses.

  Hard as they are to find, there are still valuable programs and caring professionals at work who can make an enormous difference in the lives of people with serious mental illnesses. The barriers to accessing such effective programs and compassionate clinicians are in some ways worsened by the arguments over the appropriate use—if any—of antipsychotics and other psychotropic drugs. In reading the disturbing stories about drug industry corruption and needless deaths in this book and in the occasional investigative series, one might be tempted to conclude they should never be used because the dangers are too great—a view held by psychologist Mary Vieten and Dr. Peter Breggin, among others.

  Unfortunately, the debate over the appropriate use of antipsychotic medications has become deeply polarized. As we’ve seen, while proponents such as Dr. E. Fuller Torrey score political points by calling for forced medication of seriously mentally ill people deemed too dangerous or unstable, critics, led by the influential journalist and author Robert Whitaker, have forcefully argued against involuntary treatment and contend that antipsychotics are widely over-used. They’ve marshaled studies that show there is limited evidence of efficacy even for those for whom the drugs were first developed: people with schizophrenia, as the history of pharmaceutical fraud so amply reveals. Whitaker’s once-heretical argument, based on decades of scientific research, that the long-term use of antipsychotics usually worsens outcomes for people with schizophrenia has prompted some—but not most—influential mainstream researchers to question such conventional uses. Even Dr. Thomas Insel, for instance, wrote in JAMA Psychiatry, “Antipsychotic medication, which seemed so important in the early phase of psychosis, appeared to worsen prospects for recovery over the long-term.”

  What’s too often downplayed in the either/or debate over antipsychotics is the notion that these medications—if judiciously prescribed and coupled with proven therapies, caring therapists and social supports—can be quite helpful for those ravaged by the symptoms of schizophrenia, at least in the short run and in relatively low doses. The harsh reality, though, is that few people disabled by the most severe and persistent forms of mental illnesses such as schizophrenia, bipolar disorder and major depression—a little over 4 percent of the population—will ever get the targeted, empathetic help shown in programs such as The Village in Long Beach, even though they too often face the long-running calamities of homelessness, repeat incarceration and hospitalizations. Meanwhile, millions more are needlessly exposed to antipsychotics they don’t need and that pose real dangers to their health and possibly their lives, but neither influential reform organizations nor government agencies are doing much about it.

  The commonly marketed notion of an imbalance of chemicals, as noted in the introduction, has largely been discredited by recent research. While there is no single definitive biological marker that’s yet been found for depression or other mental illnesses, there are enough indicators showing that biology doubtlessly plays a key, if not yet precisely determined or quantified, role in mental illness. These include studies of identical twins; neural imaging studies highlighting malfunctioning brain activity; and research into abnormal brain development. That research has helped to spur a new federal “brain initiative” by NIMH, but that’s not likely to offer answers anytime soon, especially since real-world clinical research accounts for only 10 percent of the institute’s budget.

  In the meantime, clinicians and consumers hope for the best with the tools at hand. Psychiatrists in the field simply can’t wait decades for new research to offer definitive solutions, or for the longstanding battles over the role of biology in mental illness to be finally reso
lved. Rigid debates about medication and diagnoses don’t help psychiatrists such as Dr. Mark Ragins, founding medical director of Mental Health America’s “The Village,” a successful program for the long-term mentally ill homeless in Long Beach. “This feels philosophical, an inside baseball debate that’s quite removed from the everyday lives of people with schizophrenia,” he says. “They’ve got concerns like: How do I get enough money to have a place to live? How do I find a primary care doctor and get him to take me seriously? How do I stop a policeman from shooting me?”

  He agrees, though, with many of the common critiques of conventional, rushed, pill-dispensing psychiatry. He shares with fellow critics of psychiatry the horror at the legacy of abusive and forced care for people with schizophrenia: “There is no other non-contagious illness in history where people are quarantined for life; or that you put ice picks into people’s brains and chop them up.” Even so, he demurs: “I admire the critics’ efforts to decrease all these negative things, but by putting psychiatrists, medications and hospitals in with all these medical things in one pile, they’ve made it difficult for me to be a compassionate psychiatrist who uses medications in prescribing,” he says. “They’re not acknowledging the humanity of relieving that suffering.”

  For instance, he describes the case of a disheveled man in his forties who was first found by The Village’s outreach staff on the street after being discharged from the hospital yet again. He was silent, sunburned, disoriented and angry, glaring up at the worker offering help, with a history of as many as eighty jailings and hospitalizations over twenty years. He never took medication on his own and never could get it together to get disability payments—and once beat up his mother so severely that she ended up deaf. “His family was terrorized,” Ragins notes. The man cycled between jails and hospitals and the streets of Long Beach.

  The Village social workers knew he’d never come for a formal medical appointment, but they invited him to lunch to meet Ragins in the cafeteria. He could barely talk or even eat a sandwich: “He was like a wild animal,” Ragins recalls. Even so, the outreach workers arranged for him to stay at a sober living facility whose kind-hearted manager tolerated his odd behavior. Ragins learned from the hospital that the man had briefly improved on an antipsychotic, Risperdal, which does have serious side effects. But Ragins still prescribed it, and it helped the client make progress while he reconnected with his once-estranged sister, who came by each day to bring him a meal. A Village case manager eventually started taking him and a few other clients to go bowling, and while at first he still couldn’t manage to tie his own shoes, he did get up and bowl some impressive strikes, a sign that he was starting to engage with others. A few months later, Ragins says, “Now he is coherent, taking his medication regularly, and he has lunch with us. He can have a conversation, he’s clean and he walks.” Unfortunately, Ragins notes, “He has gained thirty-five pounds.”

  Ragins spotlights the dilemma he’s facing as a psychiatrist: “When you talk about when to prescribe meds, here’s a guy whose entire life has changed: he can have a conversation, his family’s back, his mother is no longer in danger, he’s living someplace, he’s connected with people—but he’s got a dangerous side effect of gaining weight.”

  “I can talk to his sister about giving him less burritos, but it comes down to: Do I lower the dosage and allow him to get sicker?” he says. “But his life has been changed, so we have to ask: What are we balancing it against?” Ragins is trying to bring a balanced way of assessing this thorny issue: “If the person is not going to be able to live in the community and be tolerated, the person is going to be incarcerated either in hospitals or jails. If the person is going to be rejected and homeless repeatedly, it’s not necessarily the height of [compassionate] philosophy to say, ‘Good, let them be without meds.’”

  Informed by such a caring perspective, there’s little question that Ragins, his staff of clinicians and the teams of “personal service coordinators” available for 24/7 assistance have made a striking difference in people’s lives. Guided by a “whatever it takes” philosophy, The Village helped pioneer intensive, cost-effective services in California designed to reduce chronic homelessness, arrests and repeat hospitalizations, which inspired a statewide referendum leading to a specially-funded Mental Health Services Act in 2004. California spends about $1.5 billion annually on innovative and intensive services statewide. Its revenues derive, amazingly, from a tax on millionaires.

  Most psychiatrists have yet to adopt the nuanced, thoughtful approach to prescribing and treatment that Ragins and the Village staff represent. Moreover, their successes don’t rest on just one talented physician but on a spirit of compassion and dedication that is set at the top of the organization. What’s striking is that they don’t focus on degrees and credentials in their hiring of caseworkers, or “personal services coordinators,” and other staff who make up their “Full Service Partnership” teams, but on their warmth, friendliness, open-mindedness and caring—the qualities people in a psychiatric crisis need.

  For Brad (who didn’t want his full name used), those attitudes made all the difference. He spent years in and out of treatment and jail, but when his final possession reminding him of his humanity—his bicycle—was stolen, something inside him turned on and he resolved to work seriously with the Village staff to turn his life around. “I realized that someone could kill me and no one would even notice,” he says. As a result of the regular outreach work on the streets The Village does, he got involved in treatment and discovered that he was bipolar. He became sober, now lives in a halfway house, has reunited with his family, works part-time and is no longer gripped by the suicidal depths of his bipolar disorder or alcoholism. But it’s his connection with his caseworkers and other clinicians at The Village that helps keep him on course: “Everyone on that team is all there for you,” he says.

  These days, The Village program has helped slash re-hospitalizations and re-arrests by rates ranging from over 80 percent up to 96 percent, and, through direct housing programs and other assistance, to cut homelessness by over half, according to Mental Health America of Los Angeles. During a visit there in 2014, I saw how Ragins carried out his mission to offer individualized, helpful care. He seeks to promote recovery (in short, managing mental illness successfully), hope and respect for individual rights by collaborating with his clients over their own goals, medications and personal views of their symptoms. It’s in the same spirit as McFarlane’s psychosis prevention work and the Open Dialogue model.

  Ragins’s approach brings the sort of personalized attention to his clients that a broad spectrum of psychiatry’s critics, including psychiatrist Dr. Daniel Carlat in his book Unhinged, decry is generally missing from psychiatry today. Ragins spends enough time with clients to learn what factors in their background and lives, including any history of abuse or rape, have contributed to their current crises—and tailors his treatments towards their preferences and personal objectives. For example, he commonly asks those who are hearing voices, “Are they a blessing or a curse?” Then he fashions his prescribing to fit their needs, including lowering dosages in a way that allows those who find their hallucinatory experiences comforting to hold on to them to some degree.

  That apparently seems to be a response in part to the burgeoning Hearing Voices Movement, popularized by British founder Eleanor Longden in her TED talk with nearly four million views. As The New York Times recently reported, there’s a growing alliance called the Hearing Voices Network for people seeking a non-medical approach through support groups, drop-in centers and peer-run respite centers for people in crisis. Part of the interest in these alternatives is due to the problematic side effects of antipsychotics, which cause as many as two-thirds of the people using them to stop within eighteen months. Yet what’s gotten less attention is that Longden and other “peer” leaders in the movement also accept the role of medications as often helpful if collaboratively prescribed.

  For his part, Ragins,
to demonstrate the importance of fully understanding his clients’ points of view, holds up his hand and tells the story of a patient who once held out his hand in front of Ragins’s face, and asked the doctor, “What do you see?” Ragins proceeded to describe the inside of the palm and assorted lifelines, but the patient soon interrupted him, offering a metaphor, “Until you can see the knuckles and hair on the back of my hands the way I see it, you won’t really understand me.”

  Ragins regrets, in some ways, that the broader community doesn’t offer a more loving, tolerant response to madness. “We have to deal with the way the society and treaters are at present,” he says. He contends that the current debate over psychiatric medications posits a false choice: “It’s not meds or individualization—it’s meds with individualization.” Even so, only about 75 percent of the roughly five hundred people being served at The Village are currently on medications, and the therapists accept that clients can stop taking their medications after shared decision-making and being fully informed about the consequences—with the door remaining open for help if they get in trouble again. This reflects the cornerstone of The Village’s success: building and maintaining strong relationships with their clients. (Ragins recently left The Village to work as a consultant for other mental health programs and to write a book.)

  Yet as a rare last resort for the most extremely violent or endangered clients seen at The Village, even the liberal-minded staffers there sometimes seek involuntary commitment. These people could be placed in treatment facilities although there are relatively few available beds or, under a hotly-disputed new Los Angeles County law, in expanded court-monitored AOT programs. But Village staffers generally avoid the mandatory commitment strategies touted by hard-line advocates such as Dr. E. Fuller Torrey and Rep. Tim Murphy. This philosophy of voluntarily engaging severely mentally ill people in treatment is applied county-wide by other providers when they use the AOT program that could lead to involuntary commitment, with nearly 90 percent of those reached willingly by AOT consenting to accept services.