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David Sheff,
Author, Clean & Beautiful Boy

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David Sheff, Author, on Addiction & Mental Health

It’s an honor to be here at this incredibly important gathering; I’m extremely grateful to the Alexandria Summit for taking on what I consider to be the United States’ greatest tragedy. The disease of addiction costs our society $600 billion a year. Addiction is related to most crime, lost productivity, debilitation, and incalculable suffering, and yet it’s often ignored. The ignorance about this disease is appalling – as is the stigma attached to it.

Many people don’t yet understand that addiction is itself a mental illness and almost always is accompanied by other psychiatric disorders. Our family learned this the hard way.

In a few minutes I’ll introduce my son. Nic suffered an extreme form of addiction that nearly killed him and nearly destroyed our family – and it nearly destroyed me.

There were 10 years of life-threatening drug use and rehabs and doctors: psychologists, psychiatrists, every stripe of therapy. At one point, there was a warrant out for his arrest. The phone rang in the middle of the night – the call parents fear, a call from an emergency-room doctor. “Mr. Sheff, we have your son. You’d better get down here. We don’t know if he’ll make it through the next two hours.”

After a decade of escalating drug use and crisis after crisis – every time we thought it couldn’t get worse, it did – my wife Karen and I managed to get Nic into the offices of a new psychiatrist in San Francisco. The doctor spent a couple hours with Nic, and then Karen and I went in to speak with him. He said, “Your son is going to die. We must intervene now.”

The doctor asked for Nic’s psychological tests. I’d never heard the expression and asked, “What psychological tests?” The doctor was incredulous. He said, “Do you mean to tell me that after 10 years of treatment programs and a dozen doctors – psychiatrists, psychologists, inpatient and outpatient treatment programs – no doctor had Nic tested?”

None had.

The psychiatrist ordered the tests. The testing showed that Nic had severe bipolar disorder – Type 1 and rapid cycling – and depression.

Nic believes that the recognition of his dual diagnosis and treatment with therapy and psychiatric medication are central to his ongoing sobriety. I imagine a system in the future when our children will be routinely screened for mental illnesses early, before such illnesses progress and before drugs are added to the mix. We could save millions of lives and needless heartache.

Each year, almost 50 million people in the United States suffer from one or more mental illnesses. The correlation between mental illness and drug use has been clearly established. About a third of those with a psychiatric disorder also develop a drug or alcohol abuse problem at some point in their lives. The majority of those who meet the criteria for addiction have one or more co-occurring psychiatric disorders. Fifty-six percent of those with bipolar disorder become addicted, and 46 percent of people with schizophrenia and 32 percent of those suffering depression go on to abuse drugs or are addicted. I’ve visited many rehab facilities and heard patients talk about the chronic depression or anxiety that eased when they first got high. They said they were self-medicating – or at least trying to. Meth addicts with bipolar disorder or depression have reported that when they tried the drug, they didn’t feel high; they felt normal. “It was a revelation to get a glimpse of what I imagined other people felt, a lack of pain and depression and anxiety,” one girl in a recovery group said. Nic told me that when he first tried methamphetamine he thought, if only I’d been breastfed on this. “It was the feeling I’d been looking for my whole life,” he said.

When Nic was finally in recovery, I decided to write about our family’s experience. We’d been unprepared and I wanted to warn others: Yes, this can happen to you. I wrote an article about my experiences that appeared in the New York Times Magazine, and that led to my book Beautiful Boy. When they were published, a floodgate opened. I learned how pervasive this problem was when I began to hear from people – dozens and then hundreds and eventually thousands. I learned more about the pain and anguish caused by addiction, more about its prevalence, and more about the stigma that immeasurably worsens the suffering.

When I met countless people whose lives had been devastated, I learned something else, something I couldn’t have imagined when we were going through the worst of it. I learned that no matter how bad things had gotten for our family, we were among the lucky ones. I learned this, and I learn it anew every day. I hear from them and I often meet them – devastated people. Too, too often, parents or other loved ones approach me. I can see it in their eyes before they say a word. They show me photographs of their beautiful children. Or they attach pictures to emails. Or when the mail arrives, I open envelopes, and photographs fall out like leaves that have died.

“He was the light of my life.” “She was my angel.” Child after child who is dead because he or she was afflicted with this disease and never got the treatment needed.

At the time, I’d planned to go back to writing a business book I’d been working on. But because of these people I’d gotten to know, I couldn’t. There was too much suffering. Here was a problem that was devastating families and almost no one was talking about it. And then when addiction strikes, no one knows what to do. And so I set out to learn what I could about drug use and addiction, and why we fail so miserably in our efforts to stop them. Why we’re losing so many of our children.

I learned about the scope of the problem. There are 23 million addicts in the United States. Eighty percent of children try some drug or alcohol before they’re 18. One in 10 of those will become addicted. Three hundred and fifty people die every day from their addiction. If you count only deaths from overdoses of misused prescription medication, we’re losing one person every 19 minutes. Addiction is the number three killer in the U.S., after cancer and heart disease, and the number one killer of our kids. If the scope of the problem – the ubiquity, the costs – were acknowledged publicly, our nation wouldn’t tolerate it. At least we wouldn’t ignore it. Congressman Patrick Kennedy, who will be speaking at the Summit tomorrow, told me that if the word “addiction” is mentioned on Capitol Hill, eyes glaze over. It may be because there’s no strong addiction lobby. Many addicts aren’t in any shape to advocate for themselves. And many of their family members hide because of the shame and guilt they feel.

Once I identified the scope of the problem, I sought to understand why there’s been so little focus on addiction and, more important, why we’ve so often failed at preventing and treating it.

There are many reasons. One is the nation’s failed drug policy, four decades of a war on drugs that has only exacerbated the problem. Another is the misunderstanding of addiction based on the pervading paradigm that views addicts as weak and morally bereft and rejects the hard science that shows that addiction is a brain disease.

Addiction doesn’t look like an illness. It looks like a choice.

When I first heard counselors in treatment programs describe addiction as a disease, I flatly rejected their view. I felt the adherents of the so-called disease theory were apologists for addicts (often they themselves were addicts) who were attempting to rationalize and excuse outrageous, unconscionable behavior; hedonism; and debauchery. To me, when my son was addicted, he wasn’t ill; he was an out-of-control, self-absorbed teenager who was looking for a good time and didn’t care who he hurt.

Over years, I became educated. I learned about the neurology of addiction: the mechanisms that prove – prove incontrovertibly – that addiction is a disease, a mental illness. A disease is “an interruption, cessation, or disorder of a body, system, or organ structure or function; a morbid entity ordinarily characterized by two or more of the following criteria: recognized etiologic agent(s), identifiable group of signs and symptoms, or consistent anatomic alterations.” Studies that compare the brains of addicts have consistently identified anatomic alterations. Both the brain structure and the flow of neurotransmitters through the nervous system (the reward system) are altered. This results in altered brain function, which in turn alters thinking and motivation, which in turn alter behavior.

But resistance to disease theory is enormous. Time Magazine asked me to write a column when the beloved actor Philip Seymour Hoffman died of a drug overdose. Many people, editorialists as well as readers, responded to my explanation of Hoffman’s illness with prejudice, anger, callousness, and ignorance. A major news organization published a piece that was so misguided and vindictive that it’s hard to believe that it was written by a doctor. The psychiatrist wrote, “No quirk of neurochemistry can make you rate getting high as more important than getting your kids through life. Only a disorder of character can do that.”

It has nothing to do with character – any more than leukemia, schizophrenia, or other diseases do. It has to do with structural and functional aberrations. Addicts have neurological and genetic anomalies that when combined with environmental influences cause them to respond differently to drugs than nonaddicts do. It’s why nine of 10 kids who drink and use drugs continue using in moderation or stop, but one of those becomes addicted; why that person will continue to use drugs despite catastrophic consequences. Why does it matter so much if people understand that addiction is a disease? It matters because we judge and punish people who make bad choices. We demand of them confession and contrition. On the contrary, when people are ill, we treat them with compassion, and the course forward is clearer. People who are ill don’t need blame, chastisement, prayer, or punishment – they need treatment.

Over the course of the years I spent researching this disease, if all I’d learned about was how ubiquitous addiction was; the complex biological, psychological, and environmental causes; and the devastation it causes, I’d have been left with only sadness and resignation.

But that’s not all I learned. I also learned that addiction is preventable and treatable. And so instead of sadness, I felt rage.

Rage because addiction is preventable, but we’re not preventing it. It is treatable, but we’re not treating it. The deaths could be avoided. This rage has defined my life’s work. It’s why I’m here.

We must change the course we’re on. And we can.

As I researched this disease, I didn’t only find failure and ignorance and hopelessness. Amid the darkness, I found light, too – though it was often dim and often hidden. There was light in some treatment programs in which qualified professionals are using evidence-based treatments to help sufferers of this disease get well; light in needle exchange programs and methadone clinics; light in laboratories and research sites where scientists and doctors are developing and testing new prevention and treatment strategies. There is light in the progress we’re making in our understanding of the brain – the latest neuroscience that confirms the plasticity of the neurological system. It defines our marching orders, emphasizing the urgency of identifying and treating people with psychiatric disorders when they’re young. It tells us how critical it is that we address environment as early as possible by replacing risk factors (or at least working to mitigate them) with protective factors. On one hand, we know that genetics, environment, experience, personality, etc., can all contribute to a vicious cycle that can worsen psychiatric problems including addiction and make them harder to treat. But on the other hand, we are learning more about how if we intervene when people are young, we can actually rewire the brain, changing a vicious into a virtuous cycle, and thereby transforming a life that would have been characterized by suffering and pain into one defined by resilience and joy. Promise.

So on one hand, I found hope. On the other, I found devastation – the millions of people who are suffering.

The challenge is to bring them together so the millions of people who need help get it. In a conversation a couple weeks ago, Richard Pops, Chairman and CEO of Alkermes, eloquently described what currently passes for a treatment system for addiction in the United States. The treatment you get for this disease completely depends on the door you walk through. You walk into a methadone clinic, and you’re treated with methadone. You walk through the doors of a doctor who prescribes Suboxone and you get Suboxone; through the doors of a 12-step program and you’re berated if you don’t practice the 12 steps.

The medical model for treating illness should be applied to addiction. Patients should be evaluated on a case-by-case basis. The initial step should be assessment, but it can be hard to find a doctor who can help. One survey found that only 6 percent of pediatricians recognized addiction in patients. Six percent. Most doctors never learned to screen for drug problems. One reason they miss the signs of a problem is that so few medical schools offer, never mind require, courses in substance abuse.

This is slowly changing, as a growing number of hospitals are introducing residency programs in addiction medicine. The American Board of Independent Medical Examiners recognizes addiction psychiatry as a specialty. Organizations such as the American Society of Addiction Medicine (ASAM) and the American Academy of Addiction Psychiatry (AAAP) are growing. And in more medical schools, students are now required to take courses in addiction medicine.

At the moment, though, patients and their families must wade through a broken system. Now addicts who enter treatment are routinely sent to something called rehab, but what is rehab? There’s no standard definition; it’s a generic word for a wide variety of treatments, including some that are outrageous. Some rehabs are run by self-anointed “experts” with no training or credentials, unless you count their own recoveries from addiction to heroin or crack or some other drug. In many states, you need a license to open a coffee shop or laundry, but not a rehab; anyone can open one. There are online guides: “How to Open a Drug Rehabilitation Center.”

There are 23.5 million people in this country over the age of 12 who need treatment for drug and alcohol abuse, and only 2.6 million of these afflicted individuals actually receive it. Of those, only 10 percent receive evidence-based care – despite the existence of a multibillion-dollar industry with nearly 15,000 facilities across the country.

People in need become increasingly disillusioned, skeptical of every claim, and distrustful of every promise, because most available addiction treatments are a haphazard collection of cobbled-together, often useless, and sometimes harmful recovery programs based not on medical science but on tradition, wild guesses, wishful thinking, and pseudoscience – some of which borders on voodoo. Parents or spouses of addicts are told that they must kick their loved ones out of the house. Some say that nothing short of letting an addict hit bottom will save an addict’s life, even though hitting bottom can mean dying. Waiting for an addict to hit bottom before intervening with aggressive treatment is tantamount to waiting to treat a person with diabetes until he loses his leg. Many programs offer something called “tough love” – a ludicrous and destructive paradigm when it comes to people with a life-threatening disease. Nic was in a program that requires patients who break rules (and if you’re treating adolescent drug addicts, you’re going to have many kids breaking rules) to scrub grout on the bathroom floor with a toothbrush and cut the lawn with scissors. I’m not sure how that qualifies as treatment for a disease. Some programs kick patients out who are recalcitrant and certainly kick out those who relapse, but kicking someone out of treatment for exhibiting a symptom of his or her disease is unconscionable – and it has led to deaths. When I was desperate to find a program where I could send Nic, one parent recommended a reprogramming camp in the Czech Republic. Another mom told me about a program she was told to send her child to that would treat his addiction by exorcism and past-life reintegration.

Most treatment programs in the U.S. are rooted in the view that addicts are weak, narcissistic, and iniquitous – and therefore, if they are ever to stop their destructive and self-destructive behavior, they must pray, atone for their sins, and accept that they’re powerless over their addiction. Hardly a medical approach to treating disease.

Many current programs actually reject scientific evidence. For example, they prohibit the use of addiction medications, even though medications including Vivitrol and Suboxone have been shown to be more effective in treating some addictions than anything else has. Failure to include these medications in treatment is reprehensible. It’s malpractice. And yet many in the so-called treatment system hold to the archaic and deadly view that “you don’t treat drug problems with drugs.” It turns out that you do.

But things are changing slowly, and they’ll change more.

A remarkable step forward has come with the arrival of the Affordable Care Act. With Obamacare, for the first time ever, addiction and other mental illnesses must be covered at the same rate as other diseases. The hope is that when insurance fully covers addiction treatment, presumably insurance plans won’t pay for programs that blame addicts and punish them and demand their contrition. There will be accountability. Programs will either adapt or offer evidence-based treatment practiced by qualified professionals – or they’ll go out of business.

There’s also exciting research into new interventions. I spoke to Richard Pops earlier about a common complaint I hear from researchers and addiction doctors: that pharmaceutical companies don’t invest in addiction medications because of the stigma associated with addiction and an assumption that the market is limited. But his company, Alkermes, is proving that addiction medication isn’t only worthwhile for reasons of compassion, but it’s a viable business in a growth industry. The more the medical model takes over, the more money there’ll be for research, prevention, and treatment – which will improve the prognosis of patients. We’ve seen it with other diseases. The National Cancer Institute’s budget is more than $5 billion, and NCI pays for only about 43 percent of research-project grants. Other federal agencies, the Centers for Disease Control and Prevention, the National Institutes of Health, and the Department of Defense spend millions of dollars more on cancer research. In addition, state and local governments, voluntary organizations, private institutions, and corporations spend an estimated $15 billion every year. In contrast, the budget of the National Institute on Drug Abuse, which includes most drug-related research and development in the United States, is just under $1 billion. More funding trickles into the field from other sources, but it’s trivial compared to the need. There are 1.2 million Americans with AIDS. The total spent on AIDS research is $3 billion – or $3,000 per infected person. We spend $29 per addict.

Money comes along with a new national dialogue about this disease: what it is, what causes it, how it manifests itself, how we should treat it, and how we can prevent it. Money funds new research, more research opportunities attract an influx of researchers into the field, better treatments are developed and made available to those who need them. There’ll be an ever-higher return on any investment. We know that a drop in drug use means fewer accidents, less crime, lower hospital and other healthcare costs, and fewer deaths. A UCLA study found that in California, for every dollar spent on treatment, taxpayers saved more than $7 in other services, largely through “reduced costs of crime and increased employment earnings.”

It’s a propitious time for change. This year marks the 100th anniversary of the Harrison Act, when addiction was taken out of the hands of physicians and put in the hands of the criminal justice system. This shift contributed to a climate in which addiction has been treated as a problem of morals and character. But now there is a confluence of forces that are bringing this disease back to where it belongs, so it will be seen for what it is. Not as a criminal or moral problem, but as a health problem.

There’s a building movement now that is helping.

I’m from San Francisco, and in the 1980s I watched as the AIDS epidemic swept through our city. Two of my closest friends died. Very quickly there emerged a sense of urgency in the community. It led to a movement of people who declared that they would not tolerate the status quo. They mounted a campaign based on an understanding that SILENCE EQUALS DEATH.

SILENCE EQUALS DEATH when it comes to addiction, too. People are tired of the silence. It’s leading to a growing grassroots movement, an outcry from people who are affected by addiction.

They will no longer tolerate it. They are refusing to hide in the shadows. They are organizing in communities and around the nation – circulating petitions, lobbying their legislators. Effectively pushing through legislation that is making a profound difference; for example, passing Good Samaritan laws, making Narcan-naloxone widely available, and funding local treatment facilities for the poor. People are planning bike-a-thons, teach-a-thons, a national Farm Aid–like benefit concert, and a march on the mall in Washington. They’re identifying candidates for office who commit to work with them to improve addiction prevention and treatment in their communities.

It wasn’t by choice that I became immersed in this field a decade ago. I was dragged in when my beloved eldest son became addicted and was on a trajectory that was leading to his death. There was a time when I was certain that he wouldn’t make it to the age of 21. This year he turned 32 and celebrated his fifth year sober.

Nic finally got the treatment he needed for his mental illnesses. He is proof that people with addiction and co-occurring psychiatric disorders can be treated – and that when they are, they can live full and productive lives.

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