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

by Patrick J. Kennedy

It was a fascinating coalition of really passionate people. And the gatherings were powerfully comorbid.

  The stories we heard from patients and family members during those hearings stay with me to this day. The pain of what we heard—and, in so many cases, it was pain that could have been prevented, remedied, or reduced—was sometimes hard to comprehend. So was the hope some people were able to maintain after incredible loss.

  It was important that these field hearings brought attention to state and local political leaders interested in parity—and alerted us to many regional differences in the problems of diagnosis, treatment, and insurance coverage that are hard to tease out in a half-day or full-day event in Washington. But it was the patient and family stories that haunted me the whole time, and still do.

  I especially remember Steve Winter, a middle-aged man in a wheelchair who traveled to several of our hearings around the country, at his own expense. When he was growing up in Akron, Ohio, he did not realize that his mother had a mental illness. He did not understand that she had been diagnosed with schizophrenia and was taking medication—and didn’t realize that when she started acting strangely, it was because she had stopped taking her medication. This happens a lot, often because when the medication works and the patient’s symptoms lessen, they decide they are “cured” or “in remission” and secretly stop taking the meds. Or, in the case of Steve’s mother, she had changed health insurance and there was some issue with her meds being covered under the new plan; so, since she was feeling okay, she just stopped asking for them.

  One morning just after Christmas when Steve was fourteen years old, he was sitting at the breakfast table eating his cereal when he heard his mom yell. He kept eating but suddenly felt strange and, looking down, reached into his shirt and came away with a handful of blood. Then his mother stormed into the room holding a gun.

  She yelled, “I shot your sister. I shot you and I’m going to shoot me so we can be in heaven together!” He was able to convince her to put the gun down and call for ambulances that came for all three of them. His sister was still alive, and while the bullet fired at him didn’t hit any organs, it did hit his spinal cord and he was eventually left paralyzed from the waist down. His mother was hospitalized, not charged, and within a matter of months she was stabilized on medication.

  Steve was not at these hearings for sympathy: “I’m not a professional victim,” he always said. He wanted to point out just how much money his insurance company was paying for all his bills for his disability, millions and millions that wouldn’t have been spent if the mental health system had been a little more proactive and had taken better care of his mom.

  Steve’s complaints mirrored those of many patients and family members who testified about being denied care—mostly expensive inpatient care, which was either refused altogether or withdrawn, without any real understanding of medical necessity, far before the patients were well enough to go home. Even when families had an inpatient hospitalization benefit of just thirty days, and with a high deductible, it was often hard to even get that: patients would be forced to go home after five or six days, or have their stays reviewed every two days, so instead of focusing on treatment, the families spent much of the time worrying their loved one would be prematurely discharged.

  At the same time, we heard amazing stories of the value of evidence-based, gold-standard care and the importance of treating mental illnesses as truly chronic, rather than acute and episodic—practices that not only improve patients’ lives but save insurers money. And we heard astonishing success stories. At our hearing in Palo Alto, we met Kevin Hines, one of the only people to ever survive jumping off the Golden Gate Bridge. To hear about what was going on in his brain the day he made that leap, and to see him years later, successfully treating his depression and engaged to be married, was so gratifying.

  Stories like his highlighted the tragedy and sometimes the absurdity of impediments to care. A physician from Tulsa told us about a conversation he had with an insurance company health plan reviewer, who was trying to decide if a patient was suicidal enough to get inpatient treatment. The doctor was asked if the patient had a plan to take his own life, which of course he did or his doctor wouldn’t have been trying to hospitalize him. When told that, yes, the patient reported having plans to shoot himself, the insurance reviewer then asked if the patient had a gun.

  When the doctor replied that he did, the insurance reviewer actually asked this question:

  “Does the patient have bullets?”

  —

  WHILE WE WERE ON THE ROAD, my dad and Pete Domenici worked behind the scenes and prepared their bill for the big day when it would have its public committee “markup”—in which committee members could ask questions, offer amendments, and, once they were through that gauntlet, take a committee vote. The markup was scheduled for Valentine’s Day 2007. The night before, my father and Pete and all their aides summoned all the major advocacy groups—who had been left out of negotiations to first create consensus among insurance, employers, and the guilds—to a private meeting in a Senate conference room. They were told that, for the first time, all the major business stakeholders had agreed to a mental health parity bill, and the advocacy community was expected to support this bill and no others. Apparently they barely stopped short of asking for a blood oath. And everyone agreed.

  The next day, during the actual markup, The Diane Rehm Show—a powerful, locally produced NPR talk show—featured the subject of mental health parity, with a panel that included a group rarely heard agreeing on much: Andrew Sperling, the top lobbyist from NAMI; the president of Cigna Behavioral Health, a major national insurer; and the vice president for health policy of the major employer group the American Benefits Council. Pete Domenici also called in during an early segment of the one-hour show. And then with just a few minutes remaining, and the guests answering calls from listeners, my father called in. In a great bit of political theater, he announced “some very good news . . . Just probably seven or eight minutes ago, we passed that bill out of our committee, eighteen to three. You’re the first ones to hear about it!” He explained that with that large a majority, he felt very good about the prospects for its quick passage on the Senate floor.

  He did note, however, that they were still “working with House members,” explaining, “We still, um, have a few issues there that we’re working on through. But that’s the legislative process, and we’re very hopeful and optimistic.”

  —

  NOT LONG AFTER, Jim and I were summoned to a private meeting in Pete Domenici’s second-floor hideaway in the Capitol. My father was there, too. This was not meant to be an amicable lunch get-together. It was meant to be one of those “You have meddled with the primal forces of nature, and you will atone” meetings, like in the movie Network.

  Pete was furious that we were about to propose an alternative parity bill that would get in the way of his done deal. And when Pete was mad or frustrated he didn’t just raise his voice, he threw his entire body language at you. I can still hear him like it was yesterday: “You put that stuff in there about alcohol and addicts and you’re gonna kill this bill! That’s the ultimate poison pill if you put that stuff in there!”

  He also said that covering all the diagnoses in the DSM was ridiculous—“they have jet lag and caffeine addiction in there, for god’s sake.”

  Now, Pete Domenici, at the age of seventy-four, was a true hero in the history of mental health politics: the first powerful politician to ever succeed in accomplishing anything to improve budgets for research and even get parity for serious mental illnesses on the agenda. And if he skewed toward the needs of those most disabled by mental illness, he came by that bias honestly: his daughter’s illness, which had inspired all the advocacy he and his wife did, was much more disabling than mine.

  But while I respected Pete immensely and he was a friend of my father, I also felt very strongly that he had made a bad
deal. We weren’t going to pull our bill just because he said we must. He claimed we were playing politics with mental health and that if we kept pushing our agenda to include addiction coverage, everyone would lose.

  It was a tough meeting that didn’t even end with us agreeing to disagree. He made it clear he would do everything he could to stop us.

  And we made it clear we weren’t going to stop.

  My dad was pretty quiet through all this. This was, after all, Pete’s bill, Pete’s life’s work, not his. He was really just standing in for his late friend Paul Wellstone. He wasn’t going to intercede between me and Pete. He didn’t aggressively take sides, but then he didn’t have to: one reason my dad was so successful in the Senate is when he made a promise, he kept his promise. He believed that American government was based on promises made and kept.

  That said, he also believed in process. And as we left this very uncomfortable meeting, he said he assumed that someday the two bills would end up in a conference committee.

  “That,” he said, “is democracy.”

  —

  WE FINISHED UP our field hearings and finalized our bill, which we decided to name boldly by invoking the name of the late Senator Paul Wellstone. We believed that if he were still alive, he would have supported our version, because its broad coverage was what he originally wanted in 1996. So on Wednesday, March 7, we introduced the Paul Wellstone Mental Health Parity and Addiction Equity Act, which became HR 1424, on the House floor.

  A week later, the Senate bill passed their budget committee. And those watching this process unfold began to realize just how personal the parity issue was becoming in the Senate and House, and within Washington lobbying and advocacy circles.

  The highlight—for me, anyway; less so for my dad—was a big Times story near the end of March under the headline “Proposals for Mental Health Parity Pit a Father’s Pragmatism Against a Son’s Passion.” It was illustrated with a photo he grudgingly agreed to have taken, of the two of us, each gripping our respective bills, talking very forcefully in his private Senate hideaway in front of the fireplace.

  Ratcheting up the personal issues even further, the article noted that not only had Jim and I named our bill for Paul Wellstone, but the Senator’s two sons—especially David, who had become very active in his father’s place on mental health issues—and their nonprofit had specifically asked my father and Pete Domenici not to include their father’s name on their Senate bill, because it was not “true to Paul Wellstone’s vision.”

  The story ended with my dad saying he was confident he and I could resolve our differences. “We will,” he said, “find ways of working together.”

  Chapter 20

  My probation ended in the middle of all these mental health and addiction politics, so no more urine tests or turning in my AA meeting sign-in sheets—but no change in my regular routines within the recovery community. And on May 5, 2007, I was greeted in my office by a handwritten, hand-delivered note from Jim Ramstad, congratulating me on finishing my first year in recovery—and the most sober twelve-month period in my life since, well, around age twelve or thirteen. We both discussed the anniversary with the media, and Jim made an interesting point I hadn’t thought of—the biggest difference in my life in the past year of recovery was that “his public persona is exactly the same as his private persona.”

  People who are sober, he explained, don’t have to put on a “game face” so much to mask their shameful secrets. You can be real; you can be yourself.

  This is one of the central ideas of recovery from addiction that the mental health community could really stand to learn. Because in mental illness treatment, we are not always encouraged as much to be open—we help contribute to our own stigma sometimes through fear of being ourselves, or fear of sharing our symptoms and struggles. And our caregivers, who suffer some professional stigma themselves, often contribute to this by encouraging us to hide our illness and treatment. In fact, we need to learn to be more fearless. (I was recently at a criminal justice forum where a man with bipolar disorder was describing how he had been arrested during a psychotic episode. During his testimony, he started getting really animated and agitated, and then he paused and said, “I’m going to stop now, because I’m having racing thoughts.” It was breathtaking to see that level of openness and self-awareness.)

  I am one of the few people I know who shuttles back and forth between the worlds of recovery and medical mental healthcare, as a politician and a patient, with equal trust in both approaches and faith that eventually they will be integrated. Most people, unfortunately, think they are supposed to choose just one approach (and too many people, sadly, still don’t choose either and just wait to “snap out of it”). In May of 2007, when I got my one-year chip, I was attending daily meetings in either DC or Providence and my weekly meeting with Dr. Ron Smith, as well as doing cognitive behavioral therapy at least once a week with my therapist in Providence (often on the phone) and speaking at least once every few weeks with the psychopharmacologist overseeing my meds. I didn’t see these approaches as being mutually exclusive. Mental health parity and addiction equity isn’t only about fair and equal insurance coverage. It’s also about the world of mental illness treatment and the world of addiction treatment—each of which grew from what felt like a specific form of being ostracized by society—working together much more effectively.

  We waste an awful lot of time trying to decide if people are mentally ill first and addicted secondarily, or the other way around. There is, at the moment anyway, no way to prove which one is primary, yet both the clinical communities and the patient communities can be amazingly judgmental of whichever approach they aren’t currently embracing.

  —

  TWO MONTHS AFTER my first anniversary in recovery, I turned forty. There was a big family party for me at the Cape on a mid-July weekend. Both of my parents were there, and they both had had a few drinks. My mom never drank in public, but it was obvious when she arrived that way; my dad had substantially moderated his drinking after marrying Vicki, but still loved indulging at a summer party. It was hard seeing them both this way. It made me want to join them.

  But the situation was actually even more complicated than that. I had made an interesting breakthrough in one of my group therapy sessions at Mayo. I tearfully admitted that I had always felt the most emotional connection to my father when he was drinking. When he wasn’t, he seemed more intense and difficult to bond with. I also had to admit that, as I had grown older, I felt more emotionally connected to him when we drank together. And remaining sober meant figuring out how to feel more emotionally accessible without alcohol or drugs.

  It took every bit of strength I had to hold my frustration and anxiety in check and not drink that day. Instead, I took more Vivarin than I should have, since caffeine was my only remaining crutch and I didn’t want to be seen drinking endless Red Bulls at the party. But I was basically able to hold it together.

  I had to. I had a bigger goal in sight: the first of the three House committees that had to pass our parity bill had scheduled it for markup and a vote.

  Once a bill is introduced, its sponsors are completely beholden to the Speaker of the House and the chairs of the various committees and subcommittees that must pass it before it gets a chance for a vote on the House floor. We were very fortunate to have the support of Speaker Nancy Pelosi, who I know had also been told by Pete Domenici and my father that she and the House needed to get out of their way.

  I will be eternally grateful that she politely ignored them and not only encouraged our bill but encouraged the three main committee chairs who would have to schedule hearings and markups—Charles Rangel of New York (chair of Ways and Means), John Dingell of Michigan (chair of Energy and Commerce), and George Miller of California (chair of Education and Labor)—and all the relevant subcommittee chairs, as well as their staffs, to make this a priority. This involves literally hund
reds of people, each of whose time is scheduled out in five- and ten-minute increments, for which there is literally endless demand.

  Just before my birthday weekend, the House Education and Labor subcommittee on health, employment, labor, and pensions held a hearing that was highlighted by an inspirational appearance by former First Lady Rosalynn Carter. She blew away some of the testifying national business and insurance leaders, who were there already pledged to the Senate bill and trying to punch holes in ours.

  And just after the weekend, Chairman Rangel had scheduled Ways and Means—which had already held its subcommittee hearings on the bill—to do a public markup and then a vote. The markup went fine and the committee passed the bill by a vote of 33 to 9.

  I tore the front page off a copy of the bill and wrote a note to Nancy Pelosi across the front of it:

  Today, under your Speakership, this nation took another step toward fulfilling its promised ideal of equal opportunity and justice for all. Thank you for both your personal and political support throughout this process.

  Love,

  Patrick

  And for the first time, all the people and organizations that were sure my father and Pete Domenici had already struck the final deal on parity realized that the discussion was just getting started.

  —

  THE DISCUSSION WAS even more complicated than it appeared. There were two competing bills mandating this thing called “parity,” which was a great idea but, like “racial equality,” something you couldn’t just snap your congressional fingers and make happen. But, also, the dueling bills only addressed the issue by creating new rules for private medical insurance, which people got through their employers or bought themselves.

  This private insurance covered about 65 percent of Americans under retirement age, and we hoped if we legislated a new standard there, it would be adopted across the board. Mostly, we hoped it would be adopted by the single largest insurer that wasn’t practicing parity and still had unfairly high copays and treatment limits: CMS, the Centers for Medicare and Medicaid Services, which offered government coverage for low-income Americans, disabled Americans, older Americans, and children without private insurance. But changing the rules in CMS required different legislation, which was being pushed at the same time by our colleague Representative Pete Stark.