What It Would Really Take

By John Cloud/Los Angeles

Gerald Minsk used to drop acid and smoke pot to help quell paranoid delusions that Boston's North End mafiosi were conspiring against him. Yes, it's crazy to take hallucinogens to soothe your hallucinations. But that's what untreated mental illness does to you. It can also leave you jobless and sleeping under the Boston University bridge. That's what happened to Minsk, anyway, in the 1970s. For years, his bipolar disorder was virtually ignored as he cycled in and out of jails, mental hospitals and community centers, none of which took the time, or had the resources, to treat him properly.

Millions of Americans are treated the same way. As a rule, mentally ill people are no more likely than their neighbors to be violent. But untreated mental illness can have horrific results. Andrew Goldstein asked to be hospitalized in New York because he was terrified of phantom voices. Instead, budget-conscious officials most often referred him to short-term emergency care. Last year, in a psychotic state, he shoved a woman from a subway platform to her death under the wheels of a train.

Though tragedies like this one make headlines, the real shock is what happens to the vast majority of mentally ill people. Most Americans with mental illness simply aren't treated. Of the 2 million who suffer from schizophrenia, for instance, more than half receive substandard care. Only a third of those with serious depression receive any treatment. Reformers have tried to call attention to these problems for years--former First Lady Rosalynn Carter has been an advocate since the '60s--but the mentally ill have a powerful new ally.

Tipper Gore, wife of the Vice President, has organized a first-ever White House conference on mental health, which takes place next week. Gore, who disclosed in the run-up to the conference that she was treated for depression in the early '90s, has prodded her husband's boss to ask Congress to spend more money to treat the mentally ill. President Clinton backs a bill in Congress to force employers to help too by providing equal insurance coverage for mental and physical health. (Currently, insurance plans can charge higher co-payments for psychiatric visits than for other medical care.) Clinton aims to set an example by announcing at the conference that the Federal Government will begin providing its employees equal benefits for mental and nonmental ailments.

Even if all the proposals become law, they will represent only the first steps in solving the crisis of the mentally ill. There's not much political benefit to pushing the cause of people with mental disorders, and over the past 30 years governments have done little to fulfill a promise made by President John F. Kennedy in 1963 to subsidize mental-health services in every community.

Instead, communities have hired a lot of police, and today cops are the primary care givers for most of the unemployed mentally ill. That's because 200,000 of them are homeless, according to the National Alliance for the Mentally Ill, an advocacy group. Another 200,000 are incarcerated, usually as a result of petty crimes. Fewer than 70,000, on the other hand, live in state mental hospitals. And according to a study by Maryland researchers, less than 10% of Americans with schizophrenia are treated in the smaller community programs envisioned by Kennedy-era reformers.

Attacking this problem all at once is impossible. It would take billions of dollars. The state of Virginia alone would have to spend $500 million to begin providing adequate community treatment, according to a 1998 report prepared for it by consultants. Virginia's Governor, Jim Gilmore, has proposed spending $41 million instead. The Clinton plan would increase the mental-health grants that go to all states by just $70 million next year, to $358 million in all.

In Congress, two Senators who have seen family members with mental illness benefit from modern treatments are trying to improve access to care for others. Republican Pete Domenici of New Mexico and Democrat Paul Wellstone of Minnesota have introduced a bill that would force employers to provide the same level of coverage for mental and physical illnesses. Although the bill would represent the most meager of advances--it would help only those well enough to work--its passage will still require a monumental lobbying effort. Business groups are already working against it, saying it's part of a liberal package of insurance reforms that would raise their costs.

Domenici and Wellstone point out that the legislation is a solid long-term investment, since it would help people get treated before their illnesses become so severe that they lose their jobs or hurt themselves. Even business lobbyists admit that the cost increases for mental-health insurance will be small (maybe 1%). But they fear it will open the door to other mandates as well. "You have to remember that the Patient's Bill of Rights is being considered too," says Kate Sullivan of the U.S. Chamber of Commerce, referring to the proposal in Congress to make it easier for people to get around the cost restrictions of managed care. "So you're talking about 1% here and 1.5% there, but in the aggregate, you're looking at a 6% increase, which is huge."

Prospects for the mental-health bill look even weaker in the House than in the Senate, where Domenici chairs the influential budget committee. House majority whip Tom DeLay of Texas, who has close ties to business groups, was 1 of just 17 members of the House to vote against a very weak 1996 version of the Domenici-Wellstone proposal; he also seems to have a deep suspicion of psychology in general. Just last month, he accused the American Psychological Association of trying to "normalize pedophilia" after the association published a study suggesting that not all childhood victims of sexual abuse necessarily suffer mental illness as a result.

If DeLay's views on psychology are a bit harsh, many Americans have only in the past decade begun to see mental disorders as illnesses, not moral shortcomings. Though we still whisper about it, we all know a Tipper Gore at work today. Indeed, in addition to pushing her policy goals, Gore is hoping her own story will nourish this cultural shift. She and other reformers want to convince the nation that mental illness doesn't result from bad parenting or lax churchgoing but from chemical imbalances. In Gore's case, she says there was a problem with her brain's "gas gauge."

This is canny p.r. Americans would probably feel much better about meeting the enormous costs of reform if they thought mental illness is as fixable as, say, "a game knee," as Dr. Peter Whybrow puts it. He hosted a May forum with Gore at the University of California, Los Angeles, where he chairs the psychiatry department. One of the reformers' favorite statistics is that 60% of those who have schizophrenia can be successfully treated, while just 41% of those who have angioplasty (to open up clogged blood vessels) can recover fully. Medical comparisons are often used by those coming out as mentally ill. In 1995, when Alma Powell, wife of retired General Colin Powell, said she had suffered depression, her husband said it was "very easily controlled with proper medication, just as my blood pressure is."

But this is where the p.r.--and the quick-fix politics--begin to collide with reality. To be sure, people with mental illness can get better. Advances of the past decade have given independent lives to some who thought they would never have them. But there are no cures for mental illness--only lifelong management--and treatment is highly unpredictable. At the UCLA forum and at similar events, Gore cites seemingly simple "success stories"--cases like that of Minsk, the man who had been homeless in Boston in the '70s. "We're proud of you," she told him. But those real-life cases tend to be much more complicated than fixing a game knee. Minsk's salvation wasn't medication--or it wasn't only that. By the mid-'80s, he had moved to Los Angeles and met an advocate for the mentally ill who won his trust. He helped Minsk sign up for benefits, find housing, and, yes, stay in treatment--therapy and medication.

Today, at 47, Minsk has a wife, a home and an e-mail account. He has become an advocate himself, canvassing dirty streets of downtown L.A. to tell mentally ill people about Lamp, a center he helps run for them. But the people Lamp serves "need many different solutions," Minsk says. Some need food and a bed before they can consider getting well. Others have medicated themselves with illegal drugs for so long they have become addicts. Some want to take prescription medication for their illnesses, but some don't, because of side effects or for other reasons. Many Lamp folks have all these problems, each crisis ricocheting off the others until their lives seem hopeless. For everyone, Minsk says--including himself--"there is no beginning and no end" to mental illness. It is a profoundly individual experience.

Americans may not have recognized that reality the last time they tried to reform the system. Back then, in the 1960s, there were also new wonder drugs. Chlorpromazine and its cousins composed patients enough that reformers could suggest closing the institutions that had often done no more than chain the ill to their beds. President Kennedy signed the landmark bill in 1963 that was to create as many as 2,000 community mental-health centers, compassionate places that would dispense the drugs and ease the ill into society.

Psychiatrists started to notice that the drugs brought some awful side effects--facial contortions, blurred vision--and many patients began to refuse them. But "deinstitutionalization," as the reform movement was called, was well under way. Nearly half a million patients were returned to their communities between the mid-'50s and the mid-'80s. The Federal Government never built all the centers Kennedy promised--there are just 740 today--and states didn't take up the slack.

Each state blundered differently. Washington State tied community mental-health spending to the size of welfare rolls, a sign of stigma itself. In Illinois, the state often paid nursing homes to take many of its patients. But old people and mentally ill people don't have the same needs, and few nursing homes hired the staff needed to treat the different set of patients. A bill before the Illinois legislature would require those hirings, but the efforts come too late for Russell Weston Jr. In 1996 he became an outpatient at an underfunded community mental-health center in Waterloo, Ill. The staff there can't closely monitor every patient, and Weston disappeared--until last July, when he shot and killed two U.S. Capitol police officers.

Such crimes have had political consequences. Some New York legislators, for instance, want to make it easier to force people into treatment. Such measures have a law-and-order feel, and politicians like New York Attorney General Eliot Spitzer--a Democrat who barely won his race last year--have embraced them. But most advocates for the mentally ill point out that even if the potentially violent mentally ill could be committed more easily, there are still few places to take them.

If Tipper Gore and the reformers are to educate Americans about mental illness and hence reduce its stigma, they will have to be honest about such complexities. But openness about mental illness isn't easy. Gore has at times even seemed reluctant to share her saga. She refuses to name the medication she took, and she gives few details about the nature of her depression, saying mainly that it emerged after a car accident that nearly killed her son.

Such pressures affect those who work daily to fight stigma. Consider Michael Faenza. "If I didn't take medication for depression, I would drink a quart of Jack Daniels every week to slow my thoughts enough to go to sleep," he said recently. At first he asked that the comment not be printed. But then he reconsidered: he is, after all, president of the National Mental Health Association, a 90-year-old advocacy group. "That's one of the pieces in this puzzle, to remove the shame," Faenza says. "It takes some courage to do that."