Editor's note: This story is part of a series, Hooked: America's Heroin Epidemic, that will be featured on NBC News from April 7-9.
The call came on a Saturday, a day after Thomas McLellan told an auditorium of graduate students to rethink the science of addiction. As a research psychologist at the University of Pennsylvania, no one knew more about the subject. But despite his expertise, both McLellan’s sons had become addicts. His oldest was in rehab for alcohol abuse.
But the call—from a sobbing relative—was about Bo, the younger son, who had begun to mix drinking with pills. He finished college the day of his dad’s lecture, and died of an overdose the very same night.
“It seemed like a sign from God,” McLellan later confided to a friend. He was an expert in addiction, surrounded by experts in addiction, and he had no idea what to do when the disease wormed its way into his own family. He knew what the science said, but he struggled to find the science reflected in the real world, where “treatment” still meant 28-days of moralizing and a referral to a grim local circle of metal chairs. “If I don’t know, nobody else knows,” McLellan says today, almost six years after burying his son. “Where does a schoolteacher turn? How about a truck driver? How about a cop?”
What to do for the addicted—how to stop their slide from use to abuse to oblivion—is a question confronting a record number of Americans. Heroin gets all the headlines, with the official tally of opioid addicts doubling in a decade, and overdoses tripling among the young. But no one starts with a needle in their arm. Drug and alcohol abuse in general has exploded nationwide, according to the Centers for Disease Control and Prevention, which has tracked a two-fold rise in drug-related deaths in a generation.
Most American addicts are not in treatment, however, not even a free 12-step program. Of those who are in treatment, the vast majority will quit or start using again within a year, studies show. The result is an endless loop of denial, decline, recovery and relapse.
“I’ve been a connoisseur of every big name rehab facility out there,” says former congressman Patrick Kennedy, a recovering addict and one of McLellan’s strongest allies in the push for better care. “None of them got me sober.”
But the 64-year-old McLellan is feeling downright sunny about the future of treatment. In fact, he thinks we’re about to fix it for good, drawing lessons from a program now in use for addicted physicians and airline pilots. “You’ll be happy to know,” he says, understandably happy to know himself, eight out of 10 of those treated produced clean urine for a full five years. And of those who relapsed? Most relapsed only once.
“We’re finally getting it right,” McLellan says. “The world is going to get better treatment.”
“I’ve been a connoisseur of every big name rehab facility out there. None of them got me sober.”
The new push for better treatment began shortly after his son’s death, when McLellan got call from President Barack Obama, followed by another call from Vice President Joe Biden. Would he join the administration, they wondered, serving as the Senior Scientist for the Office of National Drug Control Policy? McLellan disdains government work, which he says makes people “stupid most of the day.” He agreed because he felt it was a chance to help keep someone else from losing a child to addiction, and he was right.
In the second half of 2009 and early 2010, McLellan helped lobby substance abuse treatment into the Affordable Care Act. As of January 1, addiction and mental health care is considered one of 10 essential pillars of national health. For more than ten million people with drug or alcohol problems, it means new insurance eligibility or the expansion of existing coverage. For tens of millions of other Americans, it means a guaranteed safety net if they fall into the bottle or worse. For McLellan, it means something more profound: a victory for science-based treatment.
Historically, addiction has been viewed as a moral weakness, not a genuine disease. As a result the treatment system was shaped by amateurs, most notably an alcoholic named Bill Wilson. In 1935, while locked in a Manhattan detox room, the failed stockbroker experienced “a wind not of air but of spirit,” as he later put it, and he said it cured him of his desire to drink. A few years later he codified that experience in his famous 12-steps, settling on a number that matched the 12 apostles of the Bible.
Today almost every drug and alcohol program is based on Wilson’s model, despite a success rate below 10 percent and research suggesting that at least a fifth of programs make people worse. “They take patients, and they harm them,” McLellan says.
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It's not that the 12-steps themselves are a problem. In fact, McLellan believes they can help people. The problem is that the steps often support an outdated theory of addiction, or what McLellan calls “the washing machine model”: Dirty old addicts go in, clean new citizens come out.
McLellan likes to invite people to imagine that the same model existed for diabetes. It would mean blaming people for their diets, then denying them care until they’d gone blind or needed a limb amputated. After stabilizing them at rock bottom, they’d be scolded into better choices at a residential facility, and discharged to a church basement. Two months later, they’d be sick again. “That would be stupid,” says McLellan. “It would be malpractice.”
The national office of Alcoholics Anonymous declined to respond to McLellan's comments, but a spokesperson—himself in AA and therefore anonymous—sought to distance the group from the wider treatment industry that uses its model. "It grew up in a separate effort," the spokesperson says. "AA didn't set this in motion."
Either way, in the era of the Affordable Care Act, the industry should find a new direction, McLellan says. That’s because the ACA adopts the view of most researchers, who consider addiction to be an incurable chronic disease, something that has to be managed for life. It should force insurance companies to fund a diabetes-level continuum of care, and pressure treatment programs to provide the most effective possible care, or lose millions of new customers. Or so goes the economic theory.
Money is essential, of course, but McLellan knows that money alone isn’t enough. When his own kids began to come home sparkly-eyed and smelling of cinnamon gum, experimenting as kids do, he had the money to help them if they got in trouble. What he lacked, he realized, as the trouble piled up, was the practical knowledge to spend his money well. What treatment programs are providing proven methods of care? And which of those would be best for his kids? He simply didn’t know.
“It’s a dirty little secret, but none of these places want to be evaluated.”
Throughout the 1990s, McLellan was a rising star at the University of Pennsylvania, where he was a senior member of the Center for Studies of Addiction. But he had long been surrounded by his field. His father and brother died of alcohol-related causes. When his kids entered rehab, he became the only person in his immediate family who was not in recovery, and something heavy settled in his mind: his research was getting him promoted, but it wasn’t making a difference in the real world.
To fix that he founded the Treatment Research Institute, a nonprofit aimed at developing science-based solutions to addiction, and plowing them into the marketplace. One of his first ideas was for a guide to rehab, a ranking of what works, and why. By the night Bo died, more than a decade later, the guide was still just an idea.
But this spring, through donations made in Bo’s honor and a grant from the National Institutes of Health, TRI will finally debut the Consumer Guide to Adolescent Treatment, a sleek web-based review, akin to an interactive college guide, except based on sharper science. It’s the guide McLellan wishes he had when it counted, the guide he hopes other parents will use for a rational foothold in an emotional moment. “It’s something tangible,” he says.
To put it together McLellan turned to Consumer Reports, the premier guide to chaotic capitalism. The magazine agreed to coach the eager Ph.D., teaching him the art of comparative reviews. McLellan and his colleagues then frisked the literature of addiction, developing a list of 10 features of “quality programs.” They broke those features into dozens of components, each backed by at least two peer-reviewed studies. So what are the features and components of quality programs?
They are almost too obvious to list. Quality programs begin with quality employees, including mental health specialists, family therapists, and medical professionals. They tailor treatment based on the patient’s needs, not rigid program dictates. They prescribe medicine, attend to physical health and educational hurdles, and they prepare the patient for a long-term recovery, including monitoring and support.
“It’s not rocket science,” says McLellan, and yet as he discovered most facilities don’t come close to offering even half of it.
McLellan and his team spent years rigorously reviewing real-world programs. In this pilot stage the Consumer Guide to Adolescent Rehab is limited to programs in the Philadelphia area. But the result—which NBC News previewed exclusively—is already powerful and unprecedented, a merciless blend of science and consumer empowerment. McLellan expects to release it publicly this spring.
“Quality Counts,” reads a headline on the homepage. “Find the Best Treatment.”
Visitors can answer a few questions, and be shown only programs with the qualities they’re likely to need. Or they can enter their zip code, and scroll through programs by area, scanning their rating. A red circle means “needs improvement.” Yellow means “adequate.” Green means “good.”
While the prototype shows all three colors, the real data will reveal a lot of red. Not a single rehab reviewed by TRI got more than two green lights, and the average rating out of a perfect score of 64 points was just 13 points.
That’s even worse than what another nonprofit found a decade ago, when it conducted a national study of 144 “highly regarded” teen treatment programs. Each program in that study—conducted by Mathea Falco's Drug Strategies, a DC-based nonprofit that pioneered the review-based approach to rehab—came recommended by a major authority in the field. Out of a possible 45 points, however, the average score was a 23.
Researchers published the results topped by the word “disturbing.” McLellan uses the word “dismal.” But in fact the results are more than just dispiriting. While the prototype is flush with hundreds of fictional programs, two out three real rehabs approached by TRI declined to be evaluated—perhaps hoping to avoid the clear-eyed review their peers got.
“It’s a dirty little secret,” says Patrick Kennedy, “but none of these places want to be evaluated.”
McLellan is hoping to make such close-door policies impossible to sustain. He’ll start by listing the uncooperative programs in the guide anyhow, next to a red-stamp that says: Refused. At the same time, if his guide is successful, he’ll be funneling more and more people to the higher quality programs, and that alone will pressure everyone else to improve their services—and open their doors to independent review.
McLellan’s plan is to move from Philadelphia on to the state, and then the nation, where officials in four states have already expressed interest. At the same time, the American Society of Addiction Medicine has signed on to work on an adult version of the guide. But the key for McLellan is still users—and lots of them. He wants people pounding desks, demanding that their insurers cover the best treatments, not just the cheapest options that comply with the ACA.
It won’t happen quickly, but McLellan believes it will happen all the same. His oldest son is now in recovery, and McLellan returns to the addiction treatment currently enjoyed only by pilots and doctors. It’s simple: five years of care, beginning with rehab, progressing through stages of monitoring, and ending up in an out-patient setting. That’s it: acute care, monitoring, and consequences. It works so well, McLellan says, that pilots keep their jobs while they’re in it.
“They are flying planes,” he says, and they are taking drugs tests, “so it gives the public the kind of assurance that they should expect.”
It’s too late for such a program to benefit Bo, of course, but McLellan’s worries have passed to a new generation. He is the grandfather of two little boys, and when he thinks of the future he thinks of them. “I couldn’t be more optimistic,” he says. “The United States has now, finally, seen the light.”