Still, there is a fine line between being open and being tiresome. It’s a downer to talk about depression, and nothing is more boring than a person who talks about his own suffering all the time. When you are depressed, you sort of can’t control yourself and your depression is all that’s happening to you; but that doesn’t mean that depression has to be your primary topic of conversation for the rest of your life. I have often heard people say, “It took years for me to be able to tell my psychiatrist that . . .” and have thought that it is madness to repeat at cocktails the things you tell your psychiatrist.
Prejudice, rooted largely in insecurity, still exists. Driving with some acquaintances recently, I passed a well-known hospital. “Oh, look,” said one of them. “That’s where Isabel got herself electrocuted.” And he moved his left index finger around his ear in a sign for crazy. All my activist impulses rising toward the surface, I asked what exactly had happened to Isabel and found, as I’d anticipated, that she had received ECT at the hospital in question. “She must have had a hard time,” I said, attempting to defend the poor girl without being too earnest. “Think how shocking having shock must be.” He burst out laughing. “I nearly gave myself electroshock treatments the other day when I was trying to fix my wife’s hair dryer,” he said. I am a great believer in a sense of humor and I was not really offended, but I did try—and fail—to imagine our going past a hospital at which Isabel might have had chemotherapy and making similar jokes.
ADA (the Americans with Disabilities Act), the congressional fiat that granted significant accommodation to the handicapped, requires that employers not stigmatize the mentally ill. This brings up tough questions, many of which have been under public consideration since Listening to Prozac. Should your boss be able to require that you take antidepressants if you are not performing up to speed? If you become withdrawn, should he be able to fire you for not doing what is appropriate to the situation? It is true that people with illness under control should not be prevented from doing such work as they can. On the other hand, the ugly truth is that paraplegics cannot work as baggage handlers and fat girls can’t be supermodels. If I employed someone who regularly lapsed into depression, I’d be more than a little bit frustrated. The prejudice and the pragmatics interact to the disadvantage of those with depression, blatantly in some areas and less blatantly in others. The Federal Aviation Administration does not permit people suffering from depression to pilot commercially; if a pilot goes on an antidepressant, he must retire. The effect of this is probably to cause large numbers of depressed pilots to avoid treatment, and I would guess that passengers are a lot less safe than they would be with pilots on Prozac. That being said, one can pull through most acute crises; medication has given much strength; but there are boundaries on resilience. I would not vote for a fragile president. I wish this weren’t so. It would be nice to see the world run by someone who would understand through personal experience what I and others like me have been through. I couldn’t be president, and it would be a disaster for the world if I were to try. The few exceptions to this rule—Abraham Lincoln, or Winston Churchill, each of whom suffered from depression—use their anxiety and their concern as the basis for their leadership, but that requires a truly remarkable personality and a particular brand of depression that is not disabling at crucial times.
On the other hand, depression does not make someone useless. When Paul Bailey Mason and I first made contact, he had been suffering from depression for most of his life; in fact, it was the fiftieth anniversary of his first round of ECT. He had led a traumatized life; his mother, when he presented “disciplinary problems” in adolescence, had got some friendly Klansmen to attack him. Later, he was involuntarily committed to an asylum and while there was nearly beaten to death; he finally managed to escape during a riot by patients. He has been on full-scale social security disability payments for almost twenty years. During that time, he has earned two master’s degrees. In his late sixties, afflicted with the twin burdens of his age and his medical history, he sought help finding work and was told by officials at every level that there was no work for someone like him and that he shouldn’t bother. I know how productive a worker Mason was because I read the long stream of letters he sent to rehabilitative services in South Carolina, where he lives, and to the governor’s office, and to just about anyone else he could think of, all of which he copied to me. On medication, he seemed to function well most of the time. The sheer number of words was overwhelming. Mason was told that the jobs available to people in his situation were all manual labor, and that if he wanted a job using his mind, he was on his own. Taking occasional teaching jobs, most of which involved horrendous commutes from his home, he managed to keep body and soul together while he wrote hundreds and hundreds of pages arguing his case, explaining himself, calling out for help—all of which earned him a handful of form letters. Reading them, I doubt that Paul’s letters were ever even passed up to someone who might have been able to help him. “Depression creates its own prison,” he wrote to me. “I sit here in an apartment I can barely cope with and fight for help finding a job. When I can’t bear to be alone, as on Christmas Day last year, I go and ride the subway around Atlanta. It’s the closest I can come to other people under present circumstances.” His sentiments were echoed by many others I met. One woman who felt socially isolated by her professional failures wrote, “I am finally suffocating under the weight of not being employed.”
Richard Baron is a sometime board member of the International Association of Psychosocial Rehabilitation Services (IAPSRS), the organization for nonmedical psychiatric workers, which currently has a membership of nearly two thousand. Depressed people themselves, he writes, “have begun to voice deep concerns about the emptiness of their lives in the community without the ego-building, social-binding, and income-producing benefits of a job, demonstrating how solidly work persists as a fundamental part of the recovery process.” An analysis of current aid programs reveals a terrible problem with them. Those depressed people who can get themselves classed as disabled in the United States are eligible for Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI); they also qualify, in general, for Medicaid, which pays for what tend to be expensive ongoing treatments. People who receive SSDI and SSI are afraid of taking a job lest they lose them; indeed, less than half a percent of those who receive SSDI or SSI give them up to reenter the workforce. “The subculture of serious mental illness has no ‘folk wisdom,’ ” writes Baron, “as unshakable (and thoroughly wrong) as the notion that people who return to work will immediately lose all their SSI benefits and never be able to regain them. The mental health system acknowledges the importance of employment as a goal, but remains paralyzed in its ability to fund rehabilitation services.”
Though the most immediately applicable research in mental health has been done within the pharmaceutical industry, in the United States the brain’s most primitive mechanisms are revealed at the National Institute of Mental Health (NIMH), located on a vast, sprawling campus in Bethesda, Maryland. It is one of twenty-three line items within the budget of the National Institutes of Health (NIH); another line item is for the Substance Abuse and Mental Health Services Administration (SAMHSA), which does some depression-related work but is not part of the NIMH. At both the NIMH and SAMHSA, the instant benefit of applied research is subsidiary to an increase in human knowledge through basic research. “If you can unlock the secrets of the disease,” says Representative John Porter pragmatically, “you can do a great deal to prevent the disease. If you put money into research, you can ultimately save lives and curtail misery. People are beginning to see that the benefits are very large compared to the investment being made.”
In the early nineties, the U.S. Congress asked six prominent Nobel Prize winners in the sciences each to nominate two subjects for major research. Five of the six chose the brain. Congress declared the span from 1990 to 2000 the “Decade of the Brain” and devoted vast resources to brai
n research. “This will be remembered as one of the single most important edicts Congress passed to advance human knowledge about itself,” says Representative Bob Wise (Democrat, West Virginia). During the decade of the brain, mental illness funding increased enormously, and “people started to understand that mental illness is an illness like other illnesses,” Porter says. “People used to see mental illness as a bottomless pit that devoured money, requiring interminable psychiatric treatment, the meter always running, the progress in doubt. The new medicines changed all that. Now, however, I worry that we begin to look away from people who are not helped by or cannot be helped by the drugs.”
Within the U.S. government, Senator Paul Wellstone (Democrat, Minnesota) and Senator Pete Domenici (Republican, New Mexico) have been the most outspoken advocates of improvements in mental health law. For the moment, the political struggle at center stage concerns insurance parity. Even Americans who have comprehensive health coverage often have limited provisions for mental health; in fact, over 75 percent of health plans in the United States offer less coverage for mental health complaints than for other illnesses. At both the lifetime and the annual level, your mental health insurance may be capped at less than 5 percent of the cap for “regular” illnesses. Since the beginning of 1998, it has not been legal for U.S. companies with more than fifty employees that offer health plans to have reduced caps on mental health coverage, but those companies can still have a higher copay (the amount the patient has to pay as opposed to what the insurer pays) for mental illness than for other complaints, so that the diseases are still, in effect, not comparably covered. “That most policies would not provide coverage for my daughter with depression on the same basis as if she had epilepsy is simply incredible,” says Laurie Flynn, who heads the National Alliance for the Mentally Ill, the country’s leading advocacy group. “I have a favorable copayment for rheumatoid arthritis because that’s a ‘real’ illness, and my daughter’s illness isn’t? Mental health is very hard to define; few people have perfect mental health. Our society has no obligation, and cannot afford, to offer me insurance coverage for my personal happiness. But mental illness is much more straightforward. It’s joining the train of disenfranchised groups that are rising up and claiming their fair share.” The Americans with Disabilities Act (ADA) protects those with “mental and physical disabilities,” but mental illness is still a severe barrier to employment, and heavy with stigma. “There’s still a sense that if you were a really strong person,” says Flynn, “this wouldn’t have happened to you. If you were a really clean-living, well-raised, properly motivated person, it wouldn’t happen.”
Like all political movements, this one depends on oversimplification. “It’s a chemical imbalance just like the kidney or liver,” says Flynn. In fact there’s a certain wanting to have it both ways: wanting to be treated and wanting to be protected. “We’ve developed a five-year campaign to end discrimination by making these illnesses understood to be brain disorders and nothing more.” Which is tricky, since they are brain disorders and something more. Robert Boorstin is bipolar and is among the most prominent openly mentally ill people in the country. He has become a public spokesman on the subject of mental illness. “There are people in the ‘movement,’ ” he says, “who literally go nuts when they see the word crazy used incorrectly.”
Health maintenance organizations (HMOs) are not good news for the depressed. Sylvia Simpson, who regularly confronts HMOs in her work as a clinician at Johns Hopkins, has only horror stories to tell. “I spend more and more time on the phone with representatives of managed care companies, trying to justify patients’ staying here. When patients are still very, very ill, if they’re not acutely suicidal that day, I get told to let them out. I’ll say they need to be here and they just say, ‘I’m denying it.’ I tell family members to get on the phone, to call lawyers, to struggle. The patients are obviously too sick to do it. We feel we have to keep people here until it’s safe for them to go someplace else. So the family ends up getting the bill; if they can’t pay it, we write it off. We can’t sustain the policy, and besides, it makes the insurance companies take advantage. It also makes people more depressed; it’s just terrible.” At hospitals less wealthy, with less determined leadership, such absorbing of patient debt is often not possible; and depressed people are in no shape to argue their own cases with their insurers. “We know of numerous cases,” avers Flynn, “of people being discharged because of an HMO mandate, when they were not ready, who have committed suicide. There are deaths being caused by these policies.” “If you have the gun to your head,” says Jeanne Miranda, “you can perhaps get your treatment covered. Put it down, and you’re back out on your own.”
Depression is one hell of an expensive illness. My first breakdown cost me and my insurance five months of work; $4,000 worth of visits to the psychopharmacologist; $10,000 of talking therapy; $3,500 for medications. I of course saved a lot since I didn’t talk on the telephone, go to restaurants, or buy or wear clothes; and living at my dad’s place lowered my home electric bill. But the economics are not easy. “Let’s say your insurance policy covers fifty percent of twenty visits a year to a psychiatrist,” says Robert Boorstin. “Plus, after a thousand dollars it covers eighty percent of drugs. And that’s considered a good policy. Who can afford that? When I was admitted for my second hospitalization, my insurers said I was capped out and my brother had to put eighteen thousand dollars on his American Express card to get me admitted to the hospital.” Boorstin subsequently sued his insurer and won a settlement, but the resources to undertake such suits are few and far between. “I now spend about twenty thousand dollars per year on maintaining my mental health, without hospitalization. Even the simplest depression has to run at least two thousand or twenty-five hundred dollars per year, and a three-week hospitalization starts at fourteen thousand dollars.”
In fact, the Journal of the American Medical Association recently estimated the annual cost of depression in the United States at $43 billion: $12 billion in direct costs and $31 billion in indirect costs. Of that amount, $8 billion is lost because of the premature death of potentially productive members of the workforce; $23 billion is lost through absence from or loss of productivity in the workplace. This means that the average employer loses about $6,000 per year per depressed employee. “The model used in this study,” writes JAMA, “underestimates the true cost to society because it does not include the adverse effects of pain and suffering and other quality-of-life issues. Moreover, these estimates are conservative because the study did not take into account other important costs such as additional out-of-pocket expenses for families, excessive hospitalization for nonpsychiatric conditions due to depression, and excessive diagnostic tests looking for general medical diagnoses when depression is the cause of a patient’s symptoms.”
Since he first introduced mental health legislation in 1996, Senator Wellstone has led the battle to make such discrimination between mental and physical illness illegal. While parity legislation is pending, the notion that there is a separation between physical and mental diseases is breaking down, and it is politically expedient, perhaps even necessary, to cleave to the biological view, to let chemistry alleviate personal responsibility, giving mental illness symmetry with major physical illness. “It would be interesting to bring a lawsuit sometime against an insurer who refused parity, and say, on grounds of equal protection, that mental disorders are physical disorders and that you can’t exclude mental illness if you purport to cover all physical ailments defined and described by doctors,” Senator Domenici says. Initial parity legislation recently passed, but it is “a can of spaghetti it has so many loopholes,” as Representative Marcy Kaptur (Democrat, Ohio) put it. It does not apply to businesses with few employees; allows overall dollar limits on health care; allows insurers to place strict limits on hospital stays or outpatient services for the mentally ill; and allows insurers to require higher copayments and set higher deductibles for mental than for physical illnes
ses. While the spirit of the law is cheering, it does little to alter the status quo. Wellstone and Domenici hope to introduce a more rigorous bill.
It is hard to find anyone in Congress who is opposed on principle to healing the mentally ill; “the opposition is competition,” says Representative Porter. While declarations about the tragic nature of suicide and the danger of psychiatric complaints accumulate on the Congressional Record, legislation pertinent to these statistics does not pass easily. When the extent of coverage is increased, the cost of coverage goes up, and in the current U.S. system that means that fewer people have medical coverage. Four hundred thousand people fall off the insurance registers for every 1 percent increase in the cost of insurance. So if mental health parity were to increase the cost of medical care by 2.5 percent, a million more Americans would go uninsured. Experiments with parity demonstrate that in fact it does not necessarily raise costs by more than 1 percent; people who receive adequate mental health care are much better able to regulate their diet and exercise and to visit doctors in time for preventative medicine to be effective, and so mental health insurance largely pays for itself. Furthermore, with increasing evidence that people with serious depression are much more subject to a variety of illnesses (including infection, cancer, and heart disease) than are the general population, mental health care becomes part of an economically and socially well-balanced program for physical health. In those places where parity has been introduced, the overall added cost in the first year is less than 1 percent for family insurance. The insurance lobby, however, is always fearful that costs will spiral out of control, and arguments on the floor of the Senate show that in the minds of many people, the economics of mental health care are still highly problematical.
The Noonday Demon Page 53