Profiles in Courage, Mental Health Chapter

How does personal struggle become collective cause? How does trauma evolve into action? How can the pronouncements of one echo the hopes of many?

Questions that undoubtedly crossed the mind of Patrick J. Kennedy as he was leaving Congress in 2011, after serving Rhode Island’s 1st congressional district for more than 15 years. During that time, he was lead author of the groundbreaking Mental Health Parity and Addiction Equity Act (known as the Federal Parity Law), which requires insurers to cover treatment for mental health and substance use disorders no more restrictively than treatment for physical plagues such as heart disease and kidney failure.

Patrick is the youngest child of the late US Senator Edward Kennedy, and the nephew of two political martyrs—President John F. Kennedy and Attorney General Robert Kennedy.

Leaving Congress in 2011, Patrick J. Kennedy started a journey of personal recovery as well as an effort toward collective healing, by founding The Kennedy Forum. A center of research and leadership, the Forum states that its vision is to “create a future where diagnosis and treatment covers the brain and the body.”

Patrick’s fight for accessible mental health care and the ending of the separate and unequal treatment of addiction was the beginning of a battle that remains far from won. That Americans need more and better mental healthcare was laid bare in particular by the pandemic.

In the paragraphs that follow, Kennedy describes the future of mental health and the need for a national movement around it, in conversation with Vassilis Koutsoumpas, an Intern in Brunswick’s Washington DC office, and MPP candidate at Georgetown University’s McCourt School of Public Policy.

Your campaign for mental health reform exposed you to stigmatization. Yet in part because of your efforts, there is much greater interest and willingness today to place mental health at the heart of policy debates. Have we reached the point where we can openly discuss mental health issues in the public sphere?           

To be honest, I didn’t really choose to be the leader of mental health and addiction policy when I went into politics. I was the youngest member of Congress when I got elected. It says a lot about where stigma was at the time, that as the youngest member of Congress from the smallest state in the country, my name went first on the Mental Health Parity and Addiction Equity Act. And the only reason that happened was because I had gotten elected in spite of the fact that I was outed as someone who suffered from the disease of addiction.

The story is known. A fellow that I had been in drug rehab with sold his diary, a story basically of being a roommate of mine, to a tabloid. I ended up on their cover as a “drug addict.”

I certainly felt that that was going to be the end of my very short-lived political career. But something strange happened. In my district, people were more upset that the guy had ratted on me than that I had suffered from drug addiction.

I got elected. Now that addiction wasn’t a thing I had to keep secret anymore, I had the freedom of sponsoring a bill with the words mental and addiction in it.  No one else wanted to put their name on such a bill.

Today, amongst young people it’s easier to talk about mental health and addiction, but the older generation still has trouble openly discussing these issues. Old attitudes and stigmas persist. We’re more open about it, yet a lot of folks don’t want to talk about it.

I am writing a book by the way, Profiles in Mental Health Courage, which will come out next year. I am trying to feature folks who haven’t told their story yet—talk about them, their families and how mental health has affected their lives.

Is your work as an activist helped at all by your accomplishments as a legislator?

When I left Congress my first priority was to get sober again and focus on my own mental health. However, I knew that I wanted to continue with my advocacy. So I started The Kennedy Forum to help enforce the Federal Parity Law, knowing that it was going to take a long time to get the Bill really implemented. It takes a long time to unravel the decades of that discrimination.

A few weeks ago, President Biden issued a proposed rule to enforce the Mental Health Parity and Addiction Equity Act. The rule is the most in-depth and specific regulation that dives deep into requiring insurance companies to be transparent on how they make medical management decisions. How do they determine what care you get, what level of care you get, and how long you get care? Because their financial interest is to limit care. The Federal Parity Law forbade insurance companies from limiting mental health in the same manner as care for cancer, cardiovascular disease or diabetes. This new proposed rule requires them to prove that there are no limitations through intense and forensic auditing.

It is a physical illness. Anybody who has a brain illness will tell you this is not about personal choice. No one wakes up on any given day and decides, “I’m going to try to lose my job today. I’m going to alienate and upset all my friends.” If you think about it, no human being “in their right mind” chooses to live their life that way. In some cases, it probably started with them using drugs or alcohol voluntarily, but they lost the power of choice along the way. That’s the disease of addiction.

Now, if they have schizophrenia or bipolar disorder, we certainly understand the chemistry there. We know how loaded the genetics are, that it’s not a matter of personal choice. And we’re understanding a lot more about depression and anxiety, which both have a genetic risk level, just as a cancer would. We’re understanding that these are biologically-based illnesses. Not like they ever weren’t, but we’re better at understanding it today.

Could you speak to the need for what you’ve called a “national strategy and advocacy movement”? I love that idea. What would that entail?

We had the #MeToo movement. We had the Civil Rights Movement. We had the Labor Rights Movement, and we’ve had the Environmental Movement. Now all of these have required really active citizen engagement. They’ve all had people identifying themselves as advocates and then communicating that to their elected officials. And then they have organizations that represent those issues, that outline a list of priorities they want elected officials to adhere to, which of course requires action and accountability. And then they organize events, they vote and they donate. They have political action committees.

We have none of that in mental health and addiction. We need a new national strategy and advocacy movement. We’ve got 26 million Americans who are living in long-term recovery from addiction. But you never read about them. All you read about are the overdose rates, and all you see are the car accidents and other tragedies of people suffering from these illnesses.

A lot of members in recovery want to be anonymous at the level of press, but that doesn’t mean they can’t be active citizens on behalf of mental health. In fact, the founder of AA, Bill Wilson, testified in front of Congress. We need to learn how to engage our people so that we can bring the same level of organization and advocacy as these other movements.

If we’re all silent because we feel so shamed by our illness, the politicians don’t hear from us. Turn out, protest, organize. In politics and democracy, the squeaky wheel gets the grease.

Has the entrance of Gen-Z, a generation much more accustomed to speaking openly about mental health, resulted in any substantial improvement in corporate America. Or is the private sector more focused on “talking the talk” than “walking the walk”?

I was reading an article which stated that employees with fair or poor mental health missed 12 days of work per year, costing the United States economy $47 billion. I would say that’s very conservative, because it’s not just those with fair or poor mental health; it’s those who have a diagnosable illness. And it doesn’t account for those who aren’t coming back to work.

Post-pandemic, this is now a premium issue for CEOs. It’s not just the domain of HR anymore. It costs a lot of money to recruit, train and then manage. And then on top of that, people are staying only a short period of time because the younger generation is constantly moving onto the next job. A lot of that is because they don’t feel like their company is doing enough for them from an economic perspective but also a mental health perspective.

On every level, we need the active engagement of the Business Roundtable, Fortune 500 companies, states and labor unions. We need them to come in and help us think how to change the systemic approach. And that’s what the “Alignment for Progress” is doing.

“Alignment for Progress” is our big effort this fall where The Kennedy Forum is producing a major vision document backed up with a multitude of curated policies under each area of government, from justice to food security to human services to housing to education.

There’s no aspect of society that isn’t impacted by mental health, nor is there a function of both government and private sector that can’t make a difference in addressing the burden of these illnesses.

Your work has inspired many young people, myself included, to work on issues and causes we care about. Are you optimistic about what lies ahead?

I really am. These issues have been accepted by Democrats and Republicans, and our approach is bipartisan. It’s not about the ideology. It’s all about the facts. It’s the same solution, whether you’re a Democrat or Republican.

The investment needed in mental health is a huge, and the long-term payoff will be huge. But we need to make sure we realign the system so we get the kind of system we ultimately want.

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Vassilis Koutsoumpas is a former Intern in Brunswick’s Washington, DC office, and MPP candidate at Georgetown University’s McCourt School of Public Policy.