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

by Patrick J. Kennedy

  So, after the second One Mind meeting, I started putting together another group. This new effort would use a different President Kennedy milestone as its rallying point: the upcoming fiftieth anniversary of the signing of the Community Mental Health Act, the cornerstone of much that had gone right (and wrong) in the care of brain diseases. So, at the end of the summer of 2012, I invited a small planning group to Hyannis Port for a Kennedy-infused planning meeting, one of the first to be held at Gramma’s house since it was being run by my father’s institute.

  The group included Steve Hyman, who was now running the Stanley Center for Psychiatric Research at the Broad Institute of MIT and Harvard; Richard Frank, who had emerged as the country’s leading expert on mental healthcare economics and delivery, at Health and Human Services and at Harvard; health law advocates Paul Samuels, the director of the medical public interest group Legal Action Center in New York, and Matt Selig, my father’s former assistant chief counsel for healthcare, now executive director of Health Law Advocates; Linda Rosenberg from the National Council for Behavioral Health; Andrew Sperling, still the top lobbyist for NAMI; and two representatives from industry: Dr. Ian Shaffer, medical director of a number of top behavioral health insurance companies, and former Pennsylvania State Senator Joe Rocks, who now managed a network of behavioral health centers.

  While this was a pretty high-powered group, everyone was dressed very casually, in short-sleeve shirts and shorts or khakis; hardly anyone wore socks because we were hoping to sail in the afternoon. We spent all morning discussing the Community Mental Health Act and how it had changed the world, how it had completely failed to change the world, and what might be done to mark its anniversary and restart the conversation it had once provoked.

  While this was pretty hard-core policy talk, the conversation was occasionally brought back to earth by the cooing or laughter of my infant son, Owen, who was sitting with Amy just next to me until it was my turn to hold the little man. My mother also joined us for a while to talk a bit about her interest in the subject—and her willingness to be more outspoken about her struggles with alcoholism if it would help. And I couldn’t resist pointing out to the group, during a brief lull in the dialogue, that the girl in the bathing suit walking down the path to the docks was singer Taylor Swift, who was then dating my cousin (and probably already composing the song about their breakup).

  After several hours of conversation, we, too, headed to the docks, and a launch took us out to where my dad’s boat, the Mya, was moored. My brother, Ted, now owned and took care of the gorgeous teak sailboat, but he let us use it. On board, our dialogue continued right where it left off—except that when the wind picked up, everyone had to yell a little louder to be heard. There were rants about limited insurance coverage, FDA regulation, nonquantitative treatment limitations, cutbacks in pharmaceutical R & D for psychoactive drugs, cutbacks in federal funding for basic science research, the problems with the upcoming new DSM.

  And, every so often, the rants were interrupted by requests for cans of soda or bottled water, or the sound of Owen (in the baby seat Amy was clutching for dear life) squealing with delight when we went over a wave.

  —

  BY THE END of that windy August afternoon, I had decided to create another group, to honor the fiftieth anniversary of JFK’s Community Mental Health Act—and make sure that this time, the changes being made to help those with mental illness actually helped them.

  Our goal was nothing less than launching a new civil rights movement, to finally force medical equality for diseases of the brain. To do that we would vigorously defend the legal protections and requirements of the Mental Health Parity and Addiction Equity Act. We would define and demand the level of coordinated and proactive care that is required to treat these illnesses properly. And we would create a true community of mental health. We would help Americans understand that the community of mental health is “all of us” and not “them.”

  By achieving these goals, we could ensure more effective diagnosis for mental illness, addictions, intellectual disablities, and cognitive impairments. We would make a “checkup from the neck up” as regular as taking blood pressure. We would demand these diseases be treated as early as possible, not only when it’s almost too late—well before their final stages or, “B4Stage4” (using a smart phrase coined by our friends at Mental Health America). We would insist that all public servants—including police officers and schoolteachers—be trained in “mental health first aid.” We would attack prejudice against people with brain diseases. We would confront the “don’t ask, don’t tell” attitudes between doctors and patients that keep both from engaging on questions of mental illness and addiction. And we would promote strategies for better understanding and prevention of suicide, the ultimate avoidable tragedy of all these brain diseases.

  These were not goals that could be achieved overnight. They required creating a new process, a new meeting place for the community of mental health as defined as broadly as possible, so all the stakeholders were at the table and the common enemies were the problems, not each other. The effort needed to be bipartisan not only politically, but in the spirit of give-and-take. Patients and families and caregivers couldn’t always be right; insurance companies and pharmaceutical manufacturers couldn’t always be wrong. The idea was to pick the things that everyone agreed needed to be done and could only be done cooperatively, and to make that our mission.

  We decided to call this mental health leadership initiative the Kennedy Forum.

  One Mind is where we want to go. The Kennedy Forum is where we live.

  —

  OVER THE NEXT YEAR, we worked on developing both One Mind and the Kennedy Forum, and in between I gave dozens and dozens of speeches on brain disease and healthcare issues. But I always did it in a way that respected my recovery, my marriage, and my family—the only things in my life that I can’t afford to lose.

  I did actually set up a functioning office with a couple of assistants, and set up my schedule so I could attend a twelve-step meeting wherever I was on the road, and made sure I had enough time at home to recharge with my family and my local twelve-step group and sponsor. Being in recovery is an everyday challenge, and although I do not have any “One day at a time” pillows like my mother, I get those same phrases and reminders delivered to my smartphone several times a day by texts from twelve-step apps and my fellows in recovery.

  While I am committed to recovery as my lifeline, I kept my promise to myself and to Amy that if I needed to go back on some psychiatric medication, I would. And after several years of sobriety, I decided to add a daily dose of the anticonvulsant Lamictal to my regimen of twelve-step meetings and exercise.

  Taking an anticonvulsant has made a real difference in helping control my moods and especially my agitation, which also helps me maintain my sobriety and my commitment to recovery. Interestingly, after I started taking Lamictal again, I found out it was one of the medications my father had taken, at a higher dose than what’s used for mood disorders, to control seizures after his brain surgery. When you take the medication for seizures, of course, there’s no stigma at all. When I take it for my mood disorder, there’s stigma because I have the mood disorder, and some stigma from old-school recovery folks who think that if I was really working the steps I wouldn’t need any medication. Luckily, I have a more enlightened sponsor who is more open-minded about medical treatment. But I am still amazed at all the ways that just taking a medication you need to treat an illness can be controversial.

  —

  THE POLITICS OF DRUGS took a different turn for me in early 2013 when I decided to help Dr. Kevin Sabet, a former Obama administration senior adviser in the White House Office of National Drug Control Policy, found a group called Project SAM, Smart Approaches to Marijuana, which questions the medical and scientific wisdom of legalizing pot without any medical policy in place to treat those users in whom it is likely to trigg
er or exacerbate brain changes—including, in some cases, anything from psychosis to functional dependence.

  I favor decriminalizing marijuana possession so you only pay a fine. And I also want to see a system in place where people are screened for mental illness and drug dependency—not by the criminal justice system, but by the healthcare system.

  I know this can be a hard sell for some liberal Democrats. But even before I had kids, I noticed that a lot of parents my age—even those of us who smoked pot—were worried about the mass legalization of high-potency marijuana and products that include the ingredient in pot believed to make people feel high, THC.

  They should be worried. The kind of legalization that we’ve seen in Colorado and Washington state is opening the door to complete commercialization of these products, creating the next Big Tobacco. It is also exposing people, especially young people, to sometimes absurdly high doses of THC in products they can eat like candy and drink like soda because they are candy (edibles) and soda (elixirs) and they don’t make you high right away. In the handful of states where they are legal, THC edibles have become a leading cause for emergency room visits, especially for children and teens unaware of just how high the doses really are.

  And besides all these new THC products, smoked and “vaped” pot is much more powerful than what we ever had, and being used at increasingly younger ages when the brain is even more unformed.

  The moment I knew this idea was getting some traction is when Stephen Colbert had me on The Colbert Report to talk about it, and seemed ready to just set me up for a big punch line. But then I described to him how THC-laced cookies, drinks, and gummy bears were proliferating in Colorado, with free samples being given away on ski lifts. I think as a parent he finally got that this issue is much more complicated than it seems.

  —

  I WAS AT JOHN KERRY’S swearing in as Secretary of State when I looked across the Benjamin Franklin State Dining Room at the State Department during the reception and saw him: Louis Susman, the US Ambassador to the UK. I hadn’t spoken to him in nearly three years, since that day I cursed him out for telling my family I was detoxing in a London airport.

  The old me would have ducked and dived and made a beeline for the door. But I was trying really hard not to be the old me. So I walked right over to him. I needed to make amends.

  In recovery, this is one of the most powerful and spiritual aspects of the journey, and it’s the kind of transformational moment that doesn’t come naturally. You just have to do it. You have to make right what you made wrong. In the program, we say we have a physical allergy, a mental obsession, and a spiritual malady. A lot of people don’t like the medical disease concept of addiction because it can lead people to hide behind their diagnosis instead of taking responsibility. The difference was that now I was taking responsibility.

  “Mr. Ambassador, the last time we spoke I was very rude to you,” I said. “It was uncalled for, and I am deeply apologetic for having yelled at you. I was being very defensive because I was sick and I didn’t want anyone to know about it. I was mad you had told Vicki and the reason I yelled at you was because I was so ashamed of the situation and was angry at myself. I took it out on you, and I wanted to say I’m sorry.”

  He looked me in the eye and said, “As of this moment, I’ve forgotten all about it. I appreciate you saying this, and it’s behind us.”

  I really had a cathartic feeling, like I had done something that would make me a stronger person. About five minutes later, a woman came up to me and introduced herself as Ambassador Susman’s wife. She said she had been reading about my new life and my wife and new family, and wondered if we would come visit them sometime. And she added, “Of course, we loved your dad.” And in that moment I realized something about the implications of my behavior over all those years, that it was more far-reaching than I could have realized. Because a lot of people loved my father and my family, my self-destructive behavior wasn’t just affecting me.

  After that, I started making amends to others in my life. I apologized to Terri Alford, my former office manager, for all the times I put her in unfair positions. And then I apologized to my mother. It was Christmastime and my mother had been very ill. We were at her apartment—I was in her bedroom with her, and Amy and the kids were in her living room. I told my mom that now that I was a father, and committed to the health and well-being of my children forever, I had a profound appreciation for how my illness must have affected her. I told her I now understood how difficult it was for her to see me not well and to worry about me like she must have.

  And without missing a beat, my mom came alive, her eyes lit up, and she said, “Thank you, Patrick. It means a lot to me that you said that. You know how much I love you.”

  —

  MUCH TO MY UTTER ASTONISHMENT, we were well into the fifth year since the Mental Health Parity Act had been passed, and there was still no end in sight in the battle to get the government to issue final rules. They had issued interim rules in early 2010, which offered less clarity than confusion and even a little fear—laws are in the details, and since the conference committee on the bill had left a number of issues unresolved, we were increasingly worried that consumers could lose in the interpretation.

  The lobbying for the final rules had grown so intense that Jim Ramstad and I decided to ratchet up the volume by going out on the road again to do some field hearings. We arranged to kick off this effort at the National Press Club with members of the Parity Implementation Coalition, a lobbying group made up of many players who had been with us through the parity fight before.

  The field hearings were, again, to remind communities that the issue of parity was basically state and local—it was about holding their local private health insurance providers accountable using either the federal law or their state law, whichever was stronger, and accessing the enforcement power of state insurance commissioners and state attorneys general.

  We were actually learning a lot about this from a relatively new player in our midst, an Israeli lawyer from Los Angeles named Meiram Bendat. He had recently started a practice called Psych-Appeal that only took cases of medical insurance discrimination for mental illness and addiction. He was very smart and aggressive, and was working in various states to win cases that would both help his clients and also bring to light more information about how care approval and reimbursement decisions were made by insurers. In order to get to the point where we could advocate for best practices, we had to know more about all the practices.

  And, in defense of the insurance companies, without final rules on mental health parity from the federal government, there was no easy way to know what was a violation of the new law.

  In the midst of the Kennedy/Ramstad reunion parity tour, two of my closest allies in mental health politics got into a damaging dispute in the pages of the New York Times—about something they actually didn’t even disagree about. And the public got a glimpse of how challenging it can be to keep leading experts in our field rowing together.

  The headline read “Psychiatry’s New Guide Falls Short, Experts Say,” and the story was stunning: Tom Insel had written in his NIMH director’s blog that the new DSM, about to be published by the American Psychiatric Association, suffered from a “lack of validity” and that “patients with mental disorders deserve better.” And, of course, that set off my friend Dr. Jeffrey Lieberman, the schizophrenia researcher who is chief of psychiatry at Columbia’s medical school and was, at the moment, serving as president of the APA (where I did some consulting). Insel’s blog post was primarily a chance to draw attention to his fascinating new program Research Domain Criteria (RDoC), which was meant to push brain research beyond the existing diagnostic categories—which are reductionist but, at the moment, the best we have—by expanding the rules for NIMH studies so proposals no longer had to follow DSM categories but could explore across them as well.

  Insel believed this woul
d, one day, revolutionize diagnosis and treatment, incorporating more genetics, imaging, and cognitive science. And so did Jeff Lieberman and I, and anyone else who cared about the future of brain health. The problem was, the head of the NIMH can be disappointed by the progress in the field and in the new DSM, but to suggest that the whole diagnostic system “lacks validity”—because it isn’t good enough yet—is to suggest that every patient and clinician involved in treatment in this current system is involved in something scientifically invalid. Nobody but anti-psychiatry haters believes that.

  Lieberman did his best when the Times reporter called for comment. And after the story sent shock waves through the mental health community, Insel and Lieberman, who have known each other forever, immediately issued a joint statement explaining that DSM “represents the best information currently available for clinical diagnosis of mental disorders. Patients, families, and insurers can be confident that effective treatments are available and that the DSM is the key resource for delivering the best available care. The National Institute of Mental Health (NIMH) has not changed its position on DSM-5.” The statement went on to explain the RDoC initiative, which is extremely important for the future of neuroscience. But hardly anyone ever saw that statement, which just went out as a press release from the NIMH and APA. And it got no coverage, no correction in the Times.

  Some of this was about money, of course: Insel was looking for more funding for NIMH for RDoC and Lieberman was also protecting DSM, which is an important diagnostic reference and the cornerstone of APA’s budget. But the leaders of the NIMH and APA have to be on the same page, always, about the importance and validity of mental health treatment.