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AS JIM AND I WERE doing our last parity field hearings, we got word that the White House was calling a special meeting on mental health, and everyone had to be there. Unlike the conclave that the Clintons and the Gores had in 1999, which was years in the planning (if you included the Surgeon General’s report), this one came pretty much out of nowhere. Many of us were invited, literally, a week or two before the event, and were told nothing about the agenda. We were appreciative of the mental health protections in the Affordable Care Act—and also understood how he had to juggle our needs with those of the powerful insurance companies whose support was needed to pass the landmark bill. But a lot of us were concerned the administration had not been focused enough on the epidemic of suicides, overdoses, and addiction, and that it was dragging its feet on full implementation of mental health parity.
President Obama gave a very stirring speech to start the White House meeting. And he was very kind to give me and the parity act a big shout-out during his remarks.
There are . . . people who are leading by example [like] my great friend Patrick Kennedy. When he was running for reelection back in 2006, he could have avoided talking about his struggles with bipolar disorder and addiction. Let’s face it, he’s a Kennedy. . . . His seat was pretty safe. Everybody loved him. And yet, Patrick used his experience as a way to connect and to lift up these issues, not hide from them.
And one day, a woman came up to Patrick at a senior center and told him she was afraid to tell her friends she was taking medication for a mental illness because she was worried they might treat her differently. She told Patrick, “You’re the only one who knows aside from my son.”
And so Patrick started realizing how much power there could be for people to speak out on these issues. And Patrick carried these stories back with him to Washington, where he worked with a bipartisan group of lawmakers, including his dad, to make sure the mental health services you get through your insurance plan at work are covered the same way that physical health services are—a huge victory.
So because of Patrick’s efforts and the colleagues who worked with him, it’s easier for millions of people to join him on the road to recovery, which brings me to a second point. It’s not enough to help more Americans seek treatment—we also have to make sure that the treatment is there when they’re ready to seek it.
I was grateful for his acknowledgment, but the White House conference came and went, offering no real funding for anything new and no real political action of note. There wasn’t a hint about when they would finish the final rules for the parity act or, perhaps more important, extend parity from the private insurance companies covered in our act to Medicaid so almost all Americans would have parity.
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BY THE FALL OF 2013, my quiet post-congressional life was exploding. I was making all my recovery meetings and taking good care of myself physically, but my travel schedule was incredibly challenging. I was glad so many organizations and companies wanted to hear me talk about healthcare and parity, but I was spending too much time in planes, trains, and cabs.
Amy was pregnant again and Owen was starting to get an inkling that he wasn’t going to be getting all the youngest-kid attention anymore, just as Harper had realized when her brother was born. Construction on our new house had been delayed so many times that we were now wondering if we might actually have to head back to Amy’s parents’ house for a bit.
At the same time, we were just weeks away from the inaugural Kennedy Forum meeting at the JFK Presidential Library. And things weren’t going quite as smoothly as I might have hoped.
I was sure, in my heart, that the Kennedy Forum was something long overdue—the broad community of mental health desperately needed a convening forum, a meeting place, a way of identifying a handful of common goals all the stakeholders could never address individually. I believed that if we built it, they would come. Yet, in early October, less than three weeks before the event was supposed to take place—an event to which we had already committed a budget of a million dollars—we were hundreds of thousands of dollars short in our fund-raising. And we still didn’t have a commitment from the White House that Vice President Biden and Health and Human Services Secretary Kathleen Sebelius—whose department was still holding the parity act hostage by not issuing final rules—would be there to give the keynotes.
We had also assumed, incorrectly, that the federal government would never have allowed the five-year anniversary of the parity act—five years—to pass without issuing the final rules. That anniversary was October 3, so we had felt pretty confident that the Kennedy Forum event on the twenty-fourth would be a chance to celebrate the final rules. Instead, the anniversary passed, and there were still no rules in sight.
The Vice President and Secretary Sebelius did have a pretty good excuse—the Web page for the Affordable Care Act had gone live on October 1, and they were a little busy triaging that disaster. But as the HealthCare.gov situation got worse, our time was running out.
We had an opening speaker lined up for the dinner, NFL star Brandon Marshall, who had recently gone public with his own psychiatric illness. Dr. Aaron Beck, the ninety-one-year-old inventor of cognitive behavioral therapy, had agreed to be there so we could honor him with our first Kennedy Forum Community Health Award. And we had already secured an amazing array of people to appear at sessions the next day—every panel was packed with the kinds of seriously opposing points of view that you never see at a conference. Chelsea Clinton had agreed to run a panel on the future of mental healthcare in the community (JFK’s original idea, which still wasn’t really being practiced). Dr. Rhonda Robinson Beale, a brave medical director from one of the nation’s top health insurers, agreed to speak openly about the concerns of industry. We would have appearances from former Surgeon General Dr. David Satcher; Pamela Hyde, the director of SAMHSA; top mental health educator Dr. Mary Jane England, and many others.
But we still had no keynote for the opening-night event. We still didn’t have enough money for all the planned Forum events. And there was still no final rules for parity. We had built it, but they were really taking their good old time coming.
It wasn’t until less than a week before the event that the White House announced that Vice President Joe Biden would appear—and, perhaps more bravely, so would Secretary Sebelius.
And, suddenly, a lot of people and organizations wanted to be at the Kennedy Forum. And a lot of people offered to step up and help us build and support the organization, from my dad’s former staffer, lawyer Allan Fox, to leaders I had never met in business and science from around the world. The event turned out to be twenty-four amazing hours of politics and policy. And all anyone wanted to know was what this new community could accomplish together.
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A WEEK LATER, I got a call from the staff of the Senate Judiciary Committee saying that Senator Richard Blumenthal from Connecticut wanted to hold hearings on the absurdly long delays in issuing federal rules. Blumenthal had appeared at the parity field hearing we did in Hartford, Connecticut, the year before, and he was a big supporter of the legislation. He invited me and Cathy Morelli, a Connecticut mother who had also appeared at our hearing, telling an achingly painful story about her fourteen-year-old daughter, who suffered from an eating disorder, anxiety, and depression and had made multiple suicide attempts but was repeatedly refused inpatient care—or discharged prematurely—by her health insurer.
The morning of the actual hearing, November 7, I was sitting in Senator Blumenthal’s office making some last notes on my testimony when we received word that the final rules likely would be released the next day. So, before the hearing began, its goal had already been achieved. A very Washington result. And that was fine.
Because what we already knew was that the final rules would not be the final word. The final parity rules laid out the initial definitions of a lot of terms, and included some rulings that f
avored insurers and others that favored patients and caregivers. But it was going to be many years, many court challenges, many efforts of advocacy and brinksmanship, before we knew their real impact.
They could finally lead the country to realize my Uncle Jack’s vision of America where those with mental illnesses, addictions, and developmental disabilities would “no longer be alien to our affections or beyond the help of our communities.” Or they could be an unenforceable disaster.
We had our work cut out for us.
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BUT FIRST, I needed some long-awaited family time. Only days after the final rules were published, Amy gave birth to our daughter, Nora Kara Kennedy, six pounds, eleven ounces. And we moved into our new house—built from scratch on the lot where the house I bought us in a panic three years before had stood—just in time for Nora to come home to it. It wasn’t quite ready for Thanksgiving dinner, but we were able to have the first of many family Christmases there.
As I maintained my sobriety, my health continued to improve until, out of nowhere, in the fall of 2014, I developed a bad case of shingles, which was really painful. Doctors wanted to give me painkillers—which I, of course, wouldn’t take (but was tempted). Then they offered another kind of pain medication, Neurontin (gabapentin), which is used for seizures and mood stabilizing but also deadens nerve pain.
It worked; I felt better on it. It not only relieved the pain from shingles but a lot of the pain from anxiety—a psychic pain. In fact, when I decided to talk to my doctor about staying on it—since it did many of the same things as Lamictal—I wondered if the fact that I liked it was a bad thing. That’s how paranoid I am about abusing medication, because I know I have an absurdly high propensity for abusing anything. So I started asking everyone I knew who might have an informed opinion on this issue, which is a pretty large group.
I was mostly asking around because I’d heard a rumor that some people considered Neurontin a drug of abuse. It isn’t. In fact, when I finally decided that perhaps I would stay on it, I told my primary care doctor in New Jersey about how difficult the decision had been. He had a medical resident with him that day, and the resident said he had recently read a study in JAMA Internal Medicine about this very subject. Neurontin had been studied as a treatment for the cravings of alcoholism and had shown a significant benefit in increasing rates of abstinence in a long-term, single-site trial at the Scripps Research Institute in La Jolla, California. He quickly ran to the computer to get me the citation, wrote it out on a piece of paper, and handed it to me.
Interestingly, my primary care doctor said he would not be comfortable writing me another prescription without a consult from a specialist, so I went back to the addiction medicine specialist I had seen when I first moved to South Jersey—my backup psychiatrist, in case I needed one—and he wrote it. The drug seems to address more of my symptoms more effectively than the Lamictal, and for the time being, I’m staying on it.
Reading this might make some hard-core abstinence folks in recovery a little squeamish. But the future of care for mental illness and addiction is a new level of collaborative care, so physicians, psychotherapists, counselors, nurses, and lay support groups work together, not against each other, to make the best group effort for each individual patient. Every treatment we get needs to be more evidence based than it is now, every caregiver needs to understand and support the combinations of treatments that can be successful, and every patient needs to view their treatment and recovery as an integrated medical process.
Patients should have choices, and as long as those choices are evidence based, our medical insurance should cover them—just as it covers prescription drug remedies, surgical remedies, lifestyle remedies, preventive remedies, and combinations of these for every other disease.
It’s the only way.
Chapter 28
Very early on a perfect August Sunday morning in Hyannis Port, I met my cousin Tim Shriver at Gramma’s house for coffee. It was the only time, when the whole family was at the Cape for a summer weekend, that we could actually speak calmly and quietly, before everyone’s kids woke up and took over.
Tim was finishing up his inspiring book, Fully Alive: Discovering What Matters Most, and I was working on mine and on building the Kennedy Forum, so it was a great time to be reflecting on the legacy of our parents, and their families, in the world of medical care and advocacy. He had also been exploring his mother’s correspondence, especially on the subject of our Aunt Rosemary, just as I had been exploring the history of JFK’s Community Mental Health Act and the family’s involvement in brain disease reform. We were both looking for ways to make a difference for families with intellectual disabilities, mental illness, and addiction. Families like ours.
We were also talking about family secrets. I told Tim my story about lying to my therapist as a teenager until I browsed the “Kennedy section” of a bookstore and saw how many of the things I was trying to keep secret had been published in books.
He laughed. “The family pathology, which everybody in the family does have, is secrecy,” he said. “And that is pathology.”
We talked about how differently the worlds of intellectual disability and mental illness in America had grown over the years, as we grew up and watched our parents handle the politics and advocacy, and now that we were both involved in that full-time ourselves. I admitted to being envious of the destigmatizing power of Special Olympics, the way its programs fostered inclusion. I wondered how I might help encourage something equally transformative for mental illness and addiction. And we talked about the challenges that would face both of our fields in the future.
While our conversation was mostly about America, we also discussed the problems in the rest of the world. The World Health Organization recently had pronounced untreated mental disorders the leading cause of disability on the planet, accounting for 13 percent of the entire global burden of disease. WHO also claimed that no matter how stunning the “treatment gap” was in America and other high-income countries—where over 35 percent of people with severe mental illness got no treatment at all—the problem was more than twice as bad in less developed countries, where the percentage of untreated people could reach 85 percent. And there had been recent media coverage about many foreign countries that were just beginning to address the issues of warehousing of patients—with no real accurate diagnosis or treatment—that the US had begun confronting in the 1950s. In some places there was no care at all.
In a lot of these countries, Tim said, most people still didn’t understand the difference between intellectual disabilities and mental illness, and didn’t believe in a biological or medical basis for either. They just saw certain young people as cursed. In fact he vividly recalled a conversation with a woman from a village in Tanzania who had a son with an intellectual disability. When asked how her son was doing, she explained that she was proud that he was never “tied.”
I asked what that meant. Tim said the mother told him that young people in her village who couldn’t function well enough to be brought with their mothers to work in the field had to be left in the home all day, tied in a closet or in the yard.
This was such a common occurrence that these children were referred to as “the tied.” We just sat there for a moment, looking out over the lawn and Hyannis Harbor, taking in that concept.
As family members started stirring in the homes surrounding Gramma’s, I saw Amy walking over with the baby to join us for coffee. Tim and I agreed that with the improvements in neuroscience and the new protections of mental health parity and the Affordable Care Act, we had—for the first time since the early 1960s—reached a moment in history where great change, great improvement of health and life, were possible. And sitting on the porch where his mother and our uncle had discussed, debated, and argued about the nation’s first laws to reform the care of mental illness and intellectual disability, we realized just how many challenges were ahead of us.
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NOT LONG AGO, we had a Kennedy Forum meeting of top experts on different aspects of parity from all over the country, to begin refining our new agenda. Instead of holding it in a conference room in Washington, DC, or Boston, or out on the Cape, we decided it was time to start establishing our new home and our South Jersey community as a meeting point.
The closer I am to home, and the more I am able to spend time with my wife and our kids, the more mentally healthy I am. And even though I still push myself too hard in several-day bursts away from Brigantine, what keeps me centered is that in my mind, I am always with Amy.
Now that Nora is a little older, and we have another baby on the way, Amy has decided to leave teaching for a while to focus on a new mental health initiative for schools. She has also become a really effective public policy advocate for everything from neuroscience funding to social and emotional learning programs for the classroom.
We held our meeting on the third floor of our house, where I have my office and a study with a balcony that overlooks the bay. That view of the water was a good reminder that we could not solve every problem, or, as politicians and management consultants like to say, you “can’t boil the ocean.”
So we talked about just five major priorities, five pillars. We would focus on payer accountability to ensure full parity compliance from all private insurers and the federal government; provider accountability, which meant developing the first set of quality standards and outcome standards for behavioral health; integration and coordination between the general medical and behavioral specialty systems; technology expansion, to build bridges between data and outcomes; and a new national focus on brain fitness and health, to drive funding into new translational neuroscience research into preventive and treatment interventions.
A Common Struggle: A Personal Journey Through the Past and Future of Mental Illness and Addiction Page 35