A Common Struggle: A Personal Journey Through the Past and Future of Mental Illness and Addiction

by Patrick J. Kennedy

  On July 6, 1992, Time magazine ran a cover story about the clozapine revolution, with a picture of Brandon Fitch—a teenager with schizophrenia whose life had been turned around by the medication—attending his senior prom, rather than being in a psychiatric facility. Unfortunately, clozapine was extremely expensive and required regular blood testing because of an extremely rare but potentially dangerous side effect—so it was not being used by those who needed it the most, those already in state care or living at home and disabled.

  The politics of both clozapine and Prozac soon came onto my radar. In the Rhode Island legislature, most bills having to do with mental illness were sponsored by Democratic Senator Rhoda Perry, who had family experience with these issues. In the 1993 session, she was trying to organize support for a bill concerning a relatively new concept, which was referred to as “insurance parity”—a very early version of what we now call “mental health parity.” The bill was meant to address the disparate coverage limitations for mental illness and the absurdly low lifetime caps on care—which had existed for years but were made worse by the high cost of new brand-name psychiatric meds.

  At that time, nobody even considered the possibility that all mental illnesses could be covered equally with other medical conditions. The best they could hope for was that the very sickest patients, who were hospitalized or disabled, might get better or closer-to-equal coverage—and, in this case, that this new drug clozapine, which was the equivalent of the first “chemotherapy” for schizophrenia, would be covered. While it was a national issue, healthcare is generally delivered at the state level, so each state had to pass its own form of “insurance parity,” overseen by its own state insurance commissioner and attorney general.

  Rhoda was sponsoring this legislation at the insistence of the local affiliate of an advocacy group that was starting to get traction nationwide: NAMI, which was then the National Alliance for the Mentally Ill and is now the National Alliance on Mental Illness. It was an organization mostly made up of family members of people with schizophrenia, many of whom were disabled, in and out of hospitals, homeless shelters, and jails. It had grown in ambition under the leadership of dynamo executive director Laurie Flynn and with the scientific encouragement of in-your-face schizophrenia researcher Dr. E. Fuller Torrey (who also donated the hardcover profits from his important early book Surviving Schizophrenia to NAMI). But much of NAMI’s muscle in Washington came from its powerful ally in the US Senate: conservative New Mexico Republican Pete Domenici, who, along with his wife, Nancy, had struggled with the psychotic illness of their daughter Clare and treasured the support of fellow families in the same situation.

  The local director of Rhode Island’s AMI was a former schoolteacher named Bill Emmet, whose brother had schizophrenia and who, over the years, especially after their parents died, had gone from volunteering in this grassroots group to working for it full-time. Once Bill had Rhoda on board, he was looking for someone in the State House to sponsor the bill and was recommended to a newly elected young House member named Gordon Fox. It just so happened that Gordon Fox sat next to me in the State House. And that’s why Bill Emmet decided that, while he was there lobbying Gordon, he would introduce himself to me and give me his pitch on “insurance parity.”

  It never occurred to me that one day I would be devoting my life to this cause. (Or that, twenty years later, I would hire Bill as the executive director of my parity initiative.)

  Not long after, in June of 1993, my psychiatrist, Peter Kramer, published Listening to Prozac. I don’t remember thinking at the time that this was going to be any huge deal. He had published an earlier book about psychotherapy, in 1989, which made no apparent impact on his life or our work together.

  Peter had still never tried Prozac with me. Although he had previously tried me on imipramine, our therapy, then in its fourth year, was more focused on helping me with impulse control—to recognize and understand the consequences of trying to act on every feeling I had.

  He was also focused on helping me develop a stronger and stronger sense of myself separate from my parents, and a sense of trust in other people. He saw me the way I would only much later see myself, as someone who never had a real sense of a safe, normal home. He always remembered the day I came into therapy and sang the song from My Fair Lady that I was going to perform for my singing and public speaking class at Providence—the one that begins, “All I want is a room somewhere . . .”

  Dr. Kramer had helped me through college, and helped me through 1991 and the challenging period that followed. Just after my father turned sixty, he and Vicki announced their engagement and were soon married in a civil ceremony. Vicki moved into the McLean house with her two children from his first marriage: Curran and his younger sister, Caroline.

  Over the next couple years, my mother grew increasingly ill—her longest period of sobriety now behind her—and by 1993 we were discussing some more drastic changes in her care, thinking that perhaps it was time for Don Juhl to move in with her for a while. For the first time, however, these conversations about her care were mostly between my mother, my siblings, and me. My dad was more of an outsider—except for his waning financial responsibility, he had moved on. He re-engaged in the discussion in part because it got mixed together with a more private conversation between my parents: my father hoped my mother would agree to an annulment so he and Vicki could get married in the Catholic Church.

  As part of the discussions about my mother’s health and the possible annulment, Mom came to understand that her divorce settlement might not be sufficient to cover her living and healthcare expenses. So she asked to revisit her ten-year-old divorce settlement, to make sure her care would never be a financial burder to my brother, sister, and me.

  She had a pretty good idea of the possible expense of the care she was going to need for her alcoholism and depression, and the challenges she might have financially now that my dad was remarried. Ironically, she was facing some of the same issues of insurance discrimination and lifetime caps on care as a middle-class patient with schizophrenia. And as she became older, my siblings and I were just starting to realize we could be faced with the same kinds of issues concerning possible court-ordered care if she could not take care of herself. This was all, of course, a lot to sort out, especially since my relationship with my dad remained pretty frosty.

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  IN MARCH OF 1993, I moved to a new house—not far from where I had been living in Providence, but far enough that I became a resident of the First Congressional District, where some felt there was a vulnerable seat in the US Congress. I was making plans to test the waters for a move to DC after the 1994 midterm election.

  On top of all this, in the summer of 1993, my laid-back therapist on a quiet street in Providence, Rhode Island, became an overnight bestselling author at the center of an incredibly harsh debate about the past and future of mental healthcare. While the press coverage of his book would suggest that it was a sales pitch for everyone to try Prozac and the new class of antidepressants, SSRIs, in fact the questions it raised were much more complicated. In many ways, we’re still struggling with them today. The book was written very much from the perspective of a lifelong psychodynamic psychotherapist who was actually shocked at how well Prozac worked and who was wrestling with its implications for his colleagues. The book was the first place where many Americans heard the term Kramer had coined, “cosmetic psychopharmacology,” and heard him ponder whether Prozac made some people “better than well”—suggesting the drugs would be used not just to treat illness but to enhance the performance of well people.

  I’m sure these were interesting ideas for him to consider among his fellow mental health professionals. And he had already been writing about these ideas for a couple years in his Psychiatric Times columns, using the same phrases, including “listening to Prozac.” But by the time the book came out there was already a small backlash against the new antidepressant, which
Kramer unwittingly helped fuel, as his musings helped confirm the worst fears of a growing group of “antipsychiatry” advocates. Some of them came to their anger with mental healthcare fairly, after experiences of their own or by family members in overcrowded, underfunded state hospitals in the sixties, seventies, and eighties. Others were followers of a small group of intellectuals from the sixties, led by repentant psychiatrist Thomas Szasz, who wrote a provocative book called The Myth of Mental Illness. Szasz’s work was then hijacked by the virulently antipsychiatry Church of Scientology, which believed that mental illness didn’t exist and all treatments for it were a moneymaking scam. When Prozac turned out to have side effects—like every other medication—they considered this part of the “conspiracy.”

  Prozac helped an enormous number of people, not because it turned out to be so much more effective than earlier antidepressants, but because it was much easier to take, and many more people who needed it were willing to take it and remain on it. In every generation, this is still the primary challenge of mental illness and addiction care. We desperately want new treatments and greater understanding of the processes of the brain. But we also know that the biggest struggle is convincing those who are ill to try any treatment at all, then get them on the right treatment (which can be a frustrating process of elimination), and then keep them on the right treatment—especially after they get some relief and start to think maybe they don’t need treatment anymore. (This is also the same cycle we go through in recovery with sobriety.) The Prozac boom—which ultimately Peter’s book did not create so much as it rode the crest of an already-formed wave—was a turning point in increasing the number of sick people willing to get treatment.

  Did some take the pill who didn’t need it? Of course. That’s true for every popular new medication—especially since the 1990s, when the FDA began loosening restrictions on direct-to-consumer advertising of pharmaceuticals. And, in mental health, there was an additional change: after Prozac, primary care doctors started writing more and more prescriptions for psychoactive medications without having their patients consult mental health professionals. (From 1987 to 1997, the percentage of patients who got psychiatric meds from primary care docs doubled to nearly 75 percent; today nearly 80 percent of all antidepressants are prescribed by general practitioners, in most cases without making a psychiatric diagnosis.)

  All these changes led to many patients being treated without much monitoring and with no psychotherapy—until something went terribly wrong—and it created a great deal of friction between the American Medical Association and the American Psychiatric Association, which they are still trying to work through today. Then the American Psychological Association added to the friction by lobbying—so far unsuccessfully—for their non-MD members to be able to write prescriptions for psychiatric drugs. (The hope for the future is a more collaborative care model that is patient centered and not controlled by one caregiver; since there aren’t anywhere near enough mental health professionals, with or without MDs, to go around.)

  Peter’s book hit the New York Times bestseller list on July 18, 1993, and his life and practice were suddenly under a lot of media scrutiny. This spooked me, because I was already under a lot of local scrutiny myself, due to my likely candidacy for the US House of Representatives. During all the years I had gone to Peter for psychotherapy, I never actually parked in the small lot behind his office—I always left my car about ten blocks away and walked the rest of the way, so there was less chance someone would notice I was seeing a psychiatrist. But, that summer, people started asking me why they saw my car parked on the east side of Providence—that is, really, how small a state Rhode Island is. So I decided this would be a good time for us to stop our psychotherapy, and he agreed.

  I was, as far as I could tell at the time, doing pretty well. In retrospect, however, I was trying to re-create my insides by re-creating my outside—getting my life validated on the surface while minimizing the confusion of my inner life. I was trying to create the image that I didn’t have any problems and decided that if I didn’t drink in public or use illegal drugs, that meant I was okay. But the whole time I was seeing Peter, I would binge-drink every couple of weeks—I would basically set aside a couple days for myself where it was safe to let it all go. And I certainly fought depression and had my hypomanic moments. But it was a way of life that I was able to maintain for a long while.

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  BY THIS TIME, the battle over the Clinton Health Security Act was in full swing. While this was all happening primarily at the federal level, I do remember visiting with Ira Magaziner—the Rhode Island–based national business consultant leading the healthcare charge with Hillary Clinton—as well as speaking on the floor of the Rhode Island General Assembly to memorialize our support for the US Congress to pass healthcare reform.

  My dad had been proposing bills for national health insurance since the early 1970s—it was his legislative holy grail. The Clinton Health Security Act began as a process to legislate full national health insurance during the temporary alignment of a Democratic White House with Democratic majorities in the Senate and House. But the initiative quickly got caught up in a lot of political issues, some policy, some process, some naïveté, some nothing more than attacks on Hillary and her leading role. The Clinton plan was incredibly ambitious and had a lot of moving parts—which later became a lot of moving targets.

  When it came to mental illness and addiction, the Clinton Health Security Act had two basic steps that would unfold over eight years. It would begin with an immediate shift to very basic mental health and addiction coverage for all Americans (because more ambitious, comprehensive reform right away, according to their white paper, “could lead to chaos”). And then by 2001—when the Clintons expected to be leaving office—there would be full mental health and substance use disorder parity, no separate facilities for their treatment (because, by then, they would have been fully integrated into the rest of the healthcare system), and no prejudice against preexisting conditions or lifetime treatment limits.

  It was a Decade of the Brain dream come true—as long as they could complete and pass the bill before the midterm election in 1994.

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  IN THE FALL OF 1993, my brother was getting married. His fiancée, Kiki Gershman, was a smart young psychiatrist at Yale and an assistant professor in the medical school. Teddy was in law school at UConn at the time, and was also working as director of a project to make homes safe from lead paint, a partnership between New Haven and Yale medical school. Just before their mid-October wedding, he was interviewed about his relationship with Kiki by the Boston Globe. When they asked him about his past treatment for alcoholism, he was even more open about it than before.

  “In my family and among my friends, I’ve seen what can happen when people don’t address the problem,” he told the paper. “I realized that nothing else could be right when that part was wrong. I’m glad I did it. It’s been two and a half years since I’ve had a drink, and it was a great break. It agrees with me.”

  The wedding was on Block Island, Rhode Island. I was best man, Kara was one of the two bridesmaids, and Vicki’s two children, Caroline and Curran, were the ring bearers. Among Teddy’s ushers was his college roommate from Wesleyan, Akiva Goldsman, who was just starting to break through as a Hollywood screenplay writer; his adaptation of John Grisham’s The Client was currently filming. The son of two mental health professionals in New York, he was also starting to look for a project that might allow him to dramatize the challenges of mental illness. Several years later, he would be hired by producer Brian Grazer to write the Oscar-winning screenplay for A Beautiful Mind.

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  NOT LONG AFTER THE WEDDING, my dad held a fund-raiser for my campaign for the US Congress at his house in McLean. Things weren’t great between us, but this was work.

  The truth was, he had done me a favor by pushing me away. The distance between us gave me some of the
independence I needed to begin to construct my own life, my own narrative. I had made the decision to run for Congress myself: I didn’t need his permission and I had never really sat down and talked to him about running, or even acknowledged I might need his blessing or support. Nobody else knew this, of course. But then, nobody knew my father and I were barely speaking at this point either. I would imagine that a number of the folks who signed on to support my candidacy just assumed I was coordinating with my dad and his office. Neither of us did anything to dissuade anyone’s assumption that my father must have been enthusiastically behind me. Again, this was work.

  Dick Gephardt, the Missouri Democrat who was then House Majority Leader, had held the first major fund-raiser for me in Washington several months before, and of course Dad was there—he had to show up; his son was running for Congress. Clearly, at some level, he had to have been proud of me. We just didn’t give the press, or our supporters, any inkling of what was really going on between us.