For Severe Mental Illness, a Higher Profile and New Hope

1 Jan 2001

By Susan Brink

It was 1970. The conspiracy trial of Abbie Hoffman and the Chicago Seven was ending. Rock stars Jimi Hendrix and Janis Joplin had just died of drug overdoses. And Christy James's sister, for the first time, lost her grip on reality. "People were doing drugs. All kinds of strange things were going on," says James. So a little bizarre behavior by her 19-year-old sister--dropping out of a top-tier college, alienating devoted parents--went practically unnoticed.

But one day it could no longer be ignored. James, summoned home by a phone call from her distraught, incoherent sibling, walked into a trashed bedroom, the humid St. Louis air wafting through a window her sister had broken by hurling a chair through it. A mirror was shattered, and bedclothes were strewn about the floor. On the bare mattress was her sister, curled in a fetal position, spent, disheveled, and sobbing. "She was repeating, 'They made me do it. The voices made me do this,' " says James. Eventually her sister, whose name the family does not want published, was diagnosed with schizophrenia.

This week, the surgeon general of the United States will shed a powerful light on the sorts of illnesses that affect families like James's in the office's first-ever comprehensive report on mental health. In previous special reports, the office has used its bully pulpit to call attention to such serious public-health problems as tobacco, violence, and AIDS. Ripe for a similar focus, mental illness has long been underfunded and misunderstood, even though about 1 in 5 Americans suffers from it at some point, about 3 percent to 5 percent of them so severely they find it hard to get through the day. The direct and indirect costs of mental illness totaled $ 148 billion annually as long ago as 1990, when the toll was last fully taken.

The surgeon general's report will carry three strong messages: Mental illness is as real as heart disease; patients can benefit from new treatments and medications; and, most important, sufferers can recover. New drugs and therapies have vastly improved the outlook for the 5 million or so people with the most severe mental illnesses. "People should expect to be doing better than they've ever done in the past," says Laurie Flynn, executive director of the National Alliance for the Mentally Ill. The problem is that too often people who need the most care are not getting it. Says Anthony Lehman, professor of psychiatry at the University of Maryland medical school: "Most persons with schizophrenia are not getting anything close to optimal treatment."

Wrong dose. Mental illness is indeed among the most poorly treated of all diseases. A 1998 study of more than 700 patients, funded by the National Institute of Mental Health and led by Lehman, found that more than half of patients with schizophrenia received substandard care. It also found that more than 70 percent of patients received the wrong dose of antipsychotic medicines.

Such problems arise in part because many physicians still prescribe older medications or are untrained in the use of newer ones, or because patients and their families, frustrated by past disappointments, don't seek the latest treatment. Health insurance rarely covers mental illness as fully as it covers physical illness-- a huge obstacle to treatment because new drugs can cost up to 100 times as much as the old ones.

These shortcomings affect an audience far beyond mentally ill patients and their families. Untreated mental illness has been a factor in countless episodes of public violence, including the July 1998 shooting deaths of two police officers at the U.S. Capitol and the death earlier this year of a young woman pushed in front of a New York City subway train. A noted study of 30 mass murderers found that 40 percent had clear psychotic symptoms at the time of the crimes and another 27 percent had signs of psychosis. With treatment, though, even the most severely mentally ill are no more violent than anyone else.

Until recently, the drugs available to treat schizophrenia, such as Thorazine and Haldol, had such severe side effects, including restlessness, insomnia, and dramatic, involuntary tics, that patients frequently stopped taking them. But newer medications such as Risperdal, Seroquel, and Zyprexa, while considerably more expensive, are safer and have fewer side effects. Clozaril, which came on the market in 1990 as the first in a parade of effective new drugs, works well in some people. But it carries a small risk of a fatal blood disorder, so is recommended only for patients who fail to respond to anything else.

Aging caregivers. If a sufferer of mental illness hasn't had a comprehensive evaluation within the past five years--by a team of mental health professionals that might include a psychiatrist, social workers, and rehabilitation specialists--it is likely his treatment could be improved, experts say. And, Lehman suggests, patients should be re-evaluated every year.

Proper treatment can help lay to rest an often unspoken concern, more pressing now that the parents of many mentally ill baby boomers are entering their 70s and 80s. "What is going to happen when we're not around?" asks Elizabeth Edgar, a Washington, D.C.-area mother of a 25-year-old daughter with schizophrenia. "That thought truly sends a lightning bolt of fear through family members." Christie James's sister is 49 and has lived with her mother and father, now 78 and 81, for nearly 20 years. James, too, has done her familial duty, enduring 30 years of obscene outbursts or driving through blizzards to rescue her sister, who was wandering the freezing night in nothing more than a bathrobe. After all that, she is realistic about her ability to care for her sister. "My big concern is for when something happens to Mom and Dad," says James.

Likewise, Bettie King, 59, is already looking around for someone who will care as much as she does for her 39-year-old son, Dorian. "I keep looking at my family members and wondering who is going to be the one who is going to take this on," she says. Dorian's schizophrenia has been stable since he began taking Clozaril. But drugs alone aren't enough to ensure good care. Dorian lives in supervised housing and gets regular psychiatric care. Still, King finds she has to accompany him to some medical appointments to be sure he understands his disease.

It's just that kind of help, provided in an innovative Madison, Wis., program since 1972, that is beginning to spread nationwide. The Program of Assertive Community Treatment aims to give mentally ill people access to professionals who seek to be as dependable as family. Staff members go beyond the usual medical and psychiatric treatment by providing patients with such services as taking a cat to the vet. "They can count on us indefinitely," promises William Knoedler, psychiatrist with the Madison project. Such programs are in effect in five other states (Delaware, Idaho, Michigan, Rhode Island, and Texas), and another 19 states and the District of Columbia have begun pilot programs.

But the true success stories are those people who, properly treated, come to depend on themselves. Ken Steele spent 32 years locked in institutions, listening to voices that told him to kill himself. Six years ago, he stopped taking the older antipsychotic medicine Stelazine because it made him want to jump out of his skin. He is now on Risperdal and, he says, the voices have gone quiet.

But Steele is most heartened by the potential of people like Daniel Frey, 23. A year ago, Frey was in a mental hospital, diagnosed with schizophrenia. Today, he is in college and working with Steele on a mental health newspaper called New York City Voices. Steele will never get back the three decades he spent in institutions, but he is thankful that Frey, also successfully treated with Risperdal, lost only a year. "The medication worked within hours," Frey says. "The schizophrenic voices have disappeared."

Copyright 1999 U.S.News & World Report, L.P. Reprinted with permission.