When Politics Is Personal - (Senator Pete V. Domenici and the shaping of the US Govt. policies on brain diseases/mental illness).

Schizophrenia Update, December 2002

  • The New York Times

    September 15, 2002, Sunday, Late Edition - Final

    By Deborah Sonta (staff writer for the magazine).

    'My daughter Clare, and it's spelled c-l-a-r-e, she's my fourth child of eight," Senator Pete V. Domenici began reluctantly, his voice soft and gravelly. "Clare was a beautiful, beautiful girl. Now she's all grown up, and she's, well, she's struggling. Struggle is a good word for it."

    Domenici had been sitting beside me in an armchair in his Washington office, chatting about a re-election race that is causing him little anxiety. But when the conversation shifted to his family, and then specifically to his 40-year-old daughter, Clare, he rose abruptly and moved away, putting his solid senatorial desk between us. Sitting beneath a Navajo wall-hanging from his native New Mexico, he absorbed himself lining up pens on a yellow legal pad. A 70-year-old Republican, Domenici is not a soul-bearing, confessional type, and he has zealously guarded his family's privacy during his nearly three decades in the Senate. "Personal stuff," as he calls it, makes him squeamish; he'd rather talk about taxes or nuclear energy or almost any piece of pending legislation. With what looked like a nod to himself, however, he continued. "Clare was a very marvelous gifted athlete," he said. "In her best year in high school, she was district champion in tennis; she was a catcher on the baseball team; she was an absolutely outstanding guard on the basketball team." During her freshman year at Wake Forest in North Carolina, however, Clare started to lose her zest, growing "fuzzy" and inordinately indecisive. She would call home frequently for guidance on simple issues, "like what kind of potato to have," Domenici said. "She was all out of whack. Then my wife, Nancy, went down there to help her and ended up bringing Clare back home. That's when things got really out of hand. Her temperament totally changed. She became angry, mean. Throwing things at mirrors. Cussing, swearing. Crying, shrinking into a shell, taking to her bed. And that started two novice parents down the strange path of having to believe something we didn't want to believe. And to really believe it, to acknowledge that Clare was mentally ill, took a long time."

    As Domenici exhaled, his assistant tiptoed in to give him a note, and he asked her hopefully, "Meredith, do I have to go to an appropriation meeting?" The assistant shook her head, but Domenici had revealed all he wanted to about Clare for the moment. So he switched gears and talked, in his distinctively folksy and rambling way, about how the happenstance of Clare's illness had redirected his political agenda. If it were not for Clare's struggle with what was finally diagnosed as atypical schizophrenia, it is improbable that Pete Domenici, Mr. Fiscal, would have assumed the unlikely role of champion for the mentally ill. "I don't believe the subject ever would have come up," he acknowledged.

    Domenici had made a name for himself as the Republican Party's budget expert. He was a gray, pragmatic fiscal and social conservative who opposed abortion, gun control and same-sex marriage and supported school vouchers, tax cuts and mandatory three-strikes sentencing. He was no bleeding heart, no cause-pleader. But Clare's troubles led Pete and Nancy Domenici into what, 18 years ago, seemed almost like a secret world inhabited by all those whose lives had been touched and ineluctably changed by mental illness. "And once I got into it, I wouldn't have gotten out of it even if somehow Clare would have come out of my mind," Domenici said. "You get into the world of these dread diseases -- you hear stories -- they're terrible from the standpoint of what's happening to these people and what's happening to their families. Society was just ignoring them, denying them resources."

    It is strange to think that government works that way, that the fact that a senior senator has a mentally ill daughter can spur governmental action on mental illness. Yet on many issues, politics really is that personal and lawmaking that arbitrary. "You'd be surprised how often legislation is directly informed by our lives," Lynn N. Rivers, a Democratic member of the House from Michigan, says. "In the field of mental health, I think it's possible that nothing at all would have been done by Congress if it weren't for legislators like Domenici who were galvanized by personal experience." Rivers herself has had very direct personal experience; she is a manic-depressive. At a committee hearing this spring, after a couple of witnesses suggested that mental illnesses were not really illnesses, she snapped open her purse and extracted an amber vial -- the pills that keep her healthy -- and shook it like a maraca as if to wake them up.

    Over a decade ago, when Domenici embraced the issue, mental illness was not on the national agenda. Americans didn't like to think about it. Even now, although the subject has come out of the shadows and Prozac is in many an American medicine cabinet, Americans remain skeptical and judgmental. Domenici knew that he was growing impassioned about an issue that many of his colleagues would consider marginal, even distasteful, and that he needed colleagues who had been shaken personally, too. He ended up joining forces with a quite liberal Democratic senator, Paul Wellstone, whose older brother had grappled with severe mental illness for many years. Together the "odd couple," in Wellstone's words, nurtured bipartisan alliances with former Senator Alan Simpson, whose niece committed suicide, and Senator Harry Reid, whose father killed himself, and Tipper Gore, who has suffered depression, and Representative Marge Roukema, whose husband is a psychiatrist, and Representative Patrick Kennedy, who has also battled depression, and Senator Edward Kennedy, Patrick's influential father, and Rivers. "There has been a personal, crystallizing experience in each of our lives," Wellstone says. "You almost wish it didn't have to work that way, that all of us would care deeply anyway about people who were vulnerable and not getting the care they need. But this kind of thing happens a lot in politics for fully human reasons."

    For 10 long years, Domenici and Wellstone have focused their energies on a law that would force health insurers to treat mental and physical illnesses with full parity. They consider it civil rights legislation, but insurers and employers -- potent lobby groups who view it as a costly and unnecessary new mandate -- have largely succeeded in blocking it. Suddenly this year, however, the two senators feel tantalizingly close to achieving what once seemed a nearly impossible goal. It is odd timing, given the political preoccupation with terrorism, corporate misconduct and Iraq. But perhaps, after "A Beautiful Mind" won its Academy Awards, this was destined to be the year when the mentally ill received their due. Or perhaps it is simply because Pete Domenici has a friend in the White House, and his friend owed him one, and that's the way the chit system known as government works.

    When we talked in his office, I asked Domenici if he kept a picture of Clare in the extensive gallery of family photos behind his desk. "Sure," he said. Then he peered over the top of his glasses and rooted around. "Hmmm," he said. "Well. Hmmm. Well. I guess I don't have her here, and I'll have to fix that." He handed me a faded family portrait that looked to be from the 1970's. "That's her right there," he said, pointing to a wan girl with a faraway gaze. "I guess she has a little sad look in that one, doesn't she?" He then ambled over to a display wall adorned with professional artwork from New Mexico. In one corner hung two childlike watercolors -- a vase of flowers and a cluster of sea gulls signed "To Dad, From: Clare." A flicker of a smile crossed Domenici's face. "She's not half bad," the senator said.

    The Domenicis live in Washington, down the street from the Ashcrofts and a few blocks from the Senate in a house identifiable by the red chili peppers -- New Mexico's state vegetable -- dangling beside their front door. Clare lives by herself in an apartment in Albuquerque, with two siblings, four aunts, a boyfriend, a case manager, a job coach, a counselor and a doctor on hand to help her cope. Clare does not have hallucinations or delusions, which is why her schizophrenia is labeled atypical. Atypical schizophrenics suffer from losses -- of will and drive, of the ability to experience joy and pleasure, of cognitive functioning. Their affect tends to be flat and their thinking irrational at times.

    In Clare's case, this produces debilitating anxiety. Clare's younger sister Paula Domenici, who is a psychologist, described Clare's daily life as racked by "anguish and hell." Nonetheless, like many atypical schizophrenics who respond well to the new low-dose antipsychotic drugs, Clare has found a treatment regime that allows her to be quite functional when she sticks to it. She works; she drives; she sings in her church choir; she plays tennis at an Albuquerque tennis club -- and wins," Paula says. But Clare's condition fluctuates. Recently, she took a leave from her job sorting mail because the stresses of the mail room were getting to her. "Any little thing can rock the boat," Paula says. "She gets very hurt very easily."

    The Domenicis have grappled for years with how to balance their daughter's right to, and need for, privacy against the potential public good of talking openly about a senator's daughter's mental illness. "We would ask ourselves, 'Will it do her harm or not?"' Domenici said. And until now, they have always erred on the side of playing it safe, since they are not people who like to talk about themselves anyway. In our first conversation, Domenici squirmed, his eye on his watch. Subsequently, though, he made the decision to surmount his discomfort because he thought it might serve his political ends. Besides, it was his wife who was the really private one.

    When I first called Nancy Domenici, who is considered a lay expert on mental health by many in the field, she said: "Gosh, why me? I'm not the most hep person on the subject of mental illness." Eventually, her husband persuaded her to talk. "I didn't want to end up divorced," she joked. Still, because she is either protective or overprotective, she body-blocked the idea of my talking directly to Clare. She said that Clare was simply too "wobbly" right now.

    We chatted at her kitchen counter, sipping tea from mugs with rose handles beneath a clock that chirps a different birdsong on every hour. At one point, after the finch cried noon, the phone rang, and Nancy Domenici let the answering machine pick up. "Hi, Mom, this is Clare." Clare was calling in to report to her mother that she would be going to the doctor at 2 p.m. and to her "weigh-in" at 4. (One side effect of her medication has been a weight gain that makes Clare look matronly, and it bothers her, her parents said.) Clare's voice sounded thick around the edges, and it lingered afterward in the air between us.

    In a senate coffee shop, with a cup of Starbucks by his side, Domenici doodled on his daily press clippings. "Me/Bush," he wrote. He told me he had always hoped that the stars would line up as they now have, with a president in office whom Pete Domenici had helped elect. "Here's how it worked," Domenici said. "He's kind of my friend. He gets elected. I know there's one thing I really want to do above most other things. I wait a few months after he gets in, and then I request a meeting."

    In 1996, Domenici and Wellstone enjoyed their first success after four years of trying to overcome Congress's reluctance to address the problem of inequitable and inadequate insurance coverage for mentally ill Americans. Making a lot of compromises, they won approval for what Domenici now calls "mental illness coverage lite," a first step. The Clinton White House helped, and especially Tipper Gore, who a few years later would disclose her own experience with depression. Newt Gingrich, then the Republican speaker of the House, didn't actively assist but, after a visit from Domenici, he didn't block the legislation either -- which mental-health advocates attribute partly to the fact that Gingrich's mother suffers from bipolar disorder.

    Still, the Mental Health Parity Act of 1996 was limited in nature and in effect. It mandated equal annual and lifetime dollar limits for mental and physical benefits; lifetime limits for mental-illness coverage used to be capped at about $125,000, compared with about $1 million -- or sometimes no limit -- for physical disorders. But it allowed employers to comply with the letter rather than the spirit of the law, shifting their costs by raising co-payments and deductibles or lowering limits on hospital days and outpatient visits.

    Many states, meanwhile, introduced mental-health parity laws that go further than the federal government's. But even those states possess limited ability to regulate self-financed employer health plans, so Domenici and Wellstone wanted a broad piece of federal legislation that would set the standard. With the 1996 law due to expire by year's end anyway, they are pushing to create the first comprehensive mental-health equitable treatment act.

    Mental-health advocates say it will make things infinitely fairer. Without parity, the middle-class parents of a newly psychotic 19-year-old son, say, might discover they have a 30-day lifetime limit on psychiatric hospitalization; that limit might be reached before his illness is even diagnosed, much less treated. They would be left then with three options: go into debt, forgo treatment or turn to the overburdened public sector. If their son had been in a serious car accident, they would face no such predicament.

    The Domenici-Wellstone law does make some allowances for the business community's concerns. It does not mandate coverage of mental illnesses; it mandates equal treatment of physical and mental illnesses where such coverage exists. It exempts businesses with less than 50 employees. It doesn't include substance abuse. But insurers and employers are tired of Congress's interference, and they do not see this as a civil rights issue. "There is no right to health care," says E. Neil Trautwein, director of employment policy for the National Association of Manufacturers. "If this issue gets cast that way, it's unfair, and it kind of makes us look like the bad guys. Our members are already providing voluntary coverage."

    Many insurers and employers maintain that the parity legislation is misguided, that it will end up backfiring and prompting some providers to drop mental-health coverage entirely. They say that parity for mental-illness coverage, as designed, will drive up health-care costs and that the legislation defines mental disorders so broadly that people with problems like caffeine intoxication or jet lag will abuse the system.

    Recently, however, these opponents have lost ground. While Domenici had a couple dozen co-sponsors in 1992, when he first introduced mental-health legislation, he now has 66 senators with him on this. He has been unsuccessful, however, in reaching across the Hill and persuading the House leadership to join him, even though a majority of House members are on record as supportive. And that's why Domenici paid his visit to the Oval Office in July of last year.

    Domenici was pleasantly surprised that Bush took the issue seriously enough to ask Andrew Card, his chief of staff, to attend. The senator wasn't certain whether he needed to start at the beginning, to explain that diseases of the brain are as real as diseases of other organs and that they are treatable. "I just plain didn't know where he was on the mental issue," Domenici said. "But I was only a few sentences into it before he stopped me and said, 'On the issue of is this a disease, I've already gone up that mountain."'

    Dr. Samuel Keith, chairman of the psychiatry department at the University of New Mexico, participated in a round-table discussion on mental health with Bush in the spring. The president said that he had grown up thinking people with mental problems should just read the Bible and try harder, Keith said. But then, according to Keith, the president told the round-table participants that a close friend in Texas who was profoundly depressed went off and got treatment and returned a transformed man. This opened his eyes, the president said.

    The president was also sensitized by the suicide last year of Heinz Prechter, a Michigan businessman, Domenici said, although he was not sure whether Bush had told him this or someone else had. Prechter, who made his fortune after introducing the sunroof in the United States and was a generous donor to the Republican Party, killed himself at the end of a lifelong struggle with bipolar disorder.

    During that meeting at the White House last year, Bush told Domenici that 2002 would be a better year. In late April of this year, as promised, Bush flew to New Mexico to stand beside Pete and Nancy Domenici, endorse "full mental health parity" and pledge to get federal legislation passed by year's end. Since then, Bush hasn't put real muscle behind his pledge, and his priorities are clearly elsewhere. Domenici, though, takes it on faith -- a seasoned politician's faith -- that the president will make good on his promise. And the mere fact of Domenici's securing the president's endorsement has forced the law's longtime opponents to think about compromises.

    "Our vast preference is no additional mandates, but we don't want to be in an antagonistic position with a longtime friend like Senator Domenici," says Trautwein of the manufacturers' group. He suggested that the manufacturers would consider a narrower version of the law that mandated parity for serious brain-based illnesses like schizophrenia rather than all mental disorders. "We heard the president, and we can count noses. We don't want to see this issue rewound and replayed in the next Congress."

    When the Domenicis told Clare that she was going to be part of a magazine article, she didn't have much to say in response. It has always been difficult for Clare to see her situation clearly, her sister Paula says: "Sometimes now she'll say she has a mental illness, which is good. Ten years ago, she wasn't coherent enough in her thinking to realize she was ill."

    Ten years ago was a low point. Clare, who was then still living in Washington, would find herself driving around in a fog, unsure of what she was doing or where she was. Eventually, she checked herself into a psychiatric hospital. It was the first and last time that she was hospitalized, her mother says, locked in a closed unit with other mentally ill people, some withdrawn like her and others quite manic or psychotic. During that time, though, Clare was retested, and the Domenicis ended up with a clearer understanding of the chronic nature of her illness and with a better course of medications.

    It had been obvious since Clare dropped out of college that her functioning was abnormal, but her family initially thought she was in some kind of extended funk. Maybe it was allergies; it couldn't have been that baseball that struck her in the neck, could it? They didn't know where to turn. "We were kind of in the dark ages in terms of being willing to see a specialist," the senator told me.

    Eventually, they found their way to specialists and more specialists. But Clare's symptoms were not clear-cut, making it hard for doctors to diagnose her condition and thus for some in her family to accept that she was in the grip of something that she couldn't snap out of. At a certain point, the senator said, so many years had gone by that "you gotta acknowledge the behavior is not normal and it's probably going to be there for a while."

    That acknowledgment, he said, was scary. "When you finally arrive at the conclusion that your child has schizophrenia, you have thoughts of suicide," he said. "They threaten. You really don't know if they're going to follow through. In our case, nothing has happened. But we know friends where something has, and there probably isn't a hell of a lot of difference between the one who does it and the one who doesn't."

    Some time after Clare's hospitalization, she moved back to New Mexico. Her family thought that it would be a good idea to get her out of urban D.C. and at something of a distance from her mother, on whom she was extremely dependent. Clare lived for a while in a group home near a state farm in Carlsbad, where she worked as an assistant sports counselor for the mentally retarded residents of the farm.

    For a time, Clare was covered by Medicare, since she was collecting Social Security disability insurance payments. Medicare's coverage for mental health is quite skimpy -- only half of treatment costs and no prescription drugs unless you're hospitalized. When Clare started working, she was covered by her employer; the H.M.O. authorizes a limited number of psychiatric visits a year, but Clare's doctor, on her mother's prodding, keeps reauthorizing visits. Nancy Domenici juggles the volumes of paperwork, keeps on top of the bureaucracy and pays out of her pocket for all costs that are not covered. "What if Clare had no parents?" she asks.

    Years ago, a neighbor of the Domenicis told them about the National Alliance for the Mentally Ill. The senator and his wife went to a meeting in a church basement and discovered a world of parents dealing with the same issues facing them. "It was a godsend," Nancy Domenici says. And for the alliance too. Pete Domenici heard a lot of depressing stories with bad endings: families going broke, splitting up; mentally ill children ending up on the streets, in jail or dead. Bit by bit, the advocates lured Domenici into involvement, a speech at a convention here, an appropriation there.

    It became clear to Domenici that he could do little about one of the most pressing needs, which is an overhaul of the public mental-health system, since that is largely the responsibility of state and local governments. So he focused on what he could get done. He pushed successfully for increased federal appropriations for research into brain diseases, threw his weight behind a private research foundation and backed programs that dealt with housing, public education and the mentally ill who are homeless. Every once in a while, he told me, someone would say to him, "Isn't it good for severe mental illnesses that your daughter got one of them?" He found that distasteful.

    Domenici never expected such a protracted battle on the parity legislation, and he is tiring of it. Wellstone is downright antsy, anxious about the president's follow-through. "I haven't seen the evidence yet that the White House will deliver," he said. "I'm certainly more impatient than Pete." But then they are kind of different. Wellstone once called Domenici's office, and an assistant asked him the subject of his call. "I answered: 'Mental health! What the hell else do we agree on?"' Wellstone said.

    Unlike Domenici, Wellstone speaks with the cogent passion of a defender of the vulnerable and neglected. He fits more closely the image one might have of a lead advocate for this cause. He traces his political awakening itself to a visit he paid as a 10-year-old to a state mental institution where his college-age brother had been hospitalized after a breakdown. Wellstone's parents had gone deep into debt trying to sustain his brother in a private clinic once their insurance ran out, and the public hospital was a snake pit, he says. "My energy on this issue is fired by tremendous indignation," Wellstone says.

    Rivers, similarly, is a natural heroine for the cause. She graduated from high school pregnant, married her high-school sweetheart and started her adult life as a mother bedridden by severe depression. It took her almost a decade after her illness was diagnosed as manic depression to find a mix of medications that would allow her to be symptom-free. Eventually, though, she earned a law degree, became active in local politics and was elected to Congress in 1994 despite acknowledging her illness. ("You betcha!" she said when a caller to a radio show, obviously a plant, asked if she had ever been depressed. "And so have millions of other Americans!") At times, she and her former husband, a boiler engineer, were spending half their take-home pay on her barely insured treatment, so she takes the parity issue very personally. The only possible explanation for employers' and insurers' reluctance to cover mental illnesses on a par with physical illnesses, she says, is "ignorance or greed."

    Last year, when Rivers learned that she would have to face Representative John Dingell in a Democratic primary after her district was redrawn, she was beset by anxiety. But not for political reasons. "The one thing that frightened me was not running against the dean of the House, not all the money he was going to have, but this terrible fear that if I lost, I would lose my health insurance." Rivers is covered under a federal employees' plan that guarantees full parity coverage. "I am not smug enough to believe that I am not at risk of relapse, and my terror is getting sick again without having appropriate insurance," she said in July. Dingell did indeed beat Rivers in the August primary, leaving her to face these concerns.

    In contrast to Wellstone and Rivers, Domenici can seem uninspired, even inarticulate, in making his case. He uses euphemisms, talking about mentally ill people as being "under the shell" or "coming out from the shell" after treatment. He asks: "Is a severe schizophrenic 19-year-old who's been catatonic -- they finally got him out of it but now he's gained weight and weighs 300 pounds because that's the side effect -- is that less bad than someone with cancer?" But advocates for the mentally ill believe that Domenici's folksy awkwardness on the subject of mental illness can be quite effective, precisely because the subject makes many Americans uncomfortable. And it is, they suggest, also something of an act. Domenici's expertise is probably unparalleled on the Hill, they say, and more important, it is his political know-how, the way he bargains behind closed doors, that counts.

    Andrew Sperling, legislative director for the National Alliance for the Mentally Ill, says that Domenici has played a singular role precisely because he is such an unlikely advocate. "If the parity legislation had come along as a Kennedy-Wellstone initiative, it would never have been taken seriously in the Senate. Democrats come up with mandates on health insurance every day. But when a senior Republican senator with a fairly conservative voting record comes forward and says that in this instance the federal government has a responsibility to set a standard on the marketplace -- it has the flavor of a Nixon in China."

    As year's end approaches, Domenici knows that Clare's law, like Clare herself, needs to be watched and tended if it is not to be overlooked or derailed. He hesitantly confided that he expected Clare to marry in the near future, and it is clear that he is ready for some kind of ceremony -- the Rose Garden, maybe -- on the legislative front too. "We've been doing this for a long time," he said, "and I am older than some people think."




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