THE WOMAN ACROSS my office table was visibly upset. She had asked to be discharged against medical advice, and her bags were already packed. Before sending her home, the attending physician alerted me to the situation, and I offered to meet with the patient. I guess listening to her concerns was a way of trying to show her respect. Maybe she would find the conversation helpful. Maybe there could be lessons for us to learn as well. I asked for the chart ahead of time and read up. This was an Ivy League–educated lawyer, in her early fifties. After years of heavy drinking that followed a traumatic divorce, she had worked hard to rebuild her life. By now she was back to work part time at a Washington, D. C., law firm and in a new relationship. But her financial situation was shaky. The part-time job did not provide health insurance, and without it there was no way she could afford residential treatment. When she relapsed, she contacted our program. Luckily the social worker who evaluated her on the phone was able to check all the right boxes. It seemed the caller was eligible for one of our ongoing research protocols. This was a study to test whether a new anti-stress medication could help anxious alcoholics reduce their urges for alcohol, so it seemed ideal. And participation, of course, came with the benefit of a free month of inpatient treatment at the Mark O. Hatfield Clinical Research Center, the amazing research hospital located on the NIH campus in the Maryland suburbs.
After the phone screening, the patient was scheduled for admission and arrived as planned. The initial evaluation and consent process went fine, but it did not take many days on the unit before she began to have issues with some of the community rules. Now, maintaining the structure of everyday life on a treatment unit is challenging on the best of days. People come in with complicated problems, in different stages of withdrawal, and with very different backgrounds. They all need attention to different things, many of those very private in nature. Yet for a short time, all patients also become members of a small community. They can draw strength from one another, but there can also easily be frictions. That kind of community is hard enough to keep running smoothly in a regular treatment setting. Imagine, then, the challenges of combining that task with repeated blood sampling, psychological evaluations, brain scans, and other research procedures. Bringing all that together and still having a good treatment environment is complex beyond my imagination. I truly admire the dedicated nursing staff in our program that makes this work every single day, month after month. It is largely a mystery to me how they do it. But both the treatment and the research get done. And it seems that most of the time, there is the right balance between structure and a friendly, caring atmosphere. Conflicts rarely rise above whether someone just back from a research procedure should be allowed to turn on the television while other patients are still in a treatment group. And those conversations, too, tend to end with a joke and a smile.
This time was different, though. The issue was not one that was easy to joke away. The patient, an outspoken leftist liberal, was simply a nonbeliever. Not an “I don’t attend any particular church, but I’m sure spirituality is good” type of nonbeliever; more of a “religion is the opium of the masses”
1 kind.
So here we were. Like most places, our treatment groups were shaped after the principles of “twelve-step facilitation.” Although made more generic than the original, this is an approach to treatment that is firmly rooted in the Big Book of Alcoholics Anonymous,
2 all twelve steps of it. Famously written by William Griffith Wilson (“Bill W”) and Dr. Robert Holbrook Smith (“Dr. Bob”), the Big Book may be under your radar if you have not been exposed to the addiction treatment scene. But as a treatment manual its popularity will surely never be surpassed. Since it was first published in 1939, it has sold over thirty million copies, making it one of the most widely disseminated books of all times, alongside the likes of the Harry Potter series and the Bible. All these years later, this is a book I personally still find to be amazing reading. It is earnest, brutally so at times, such as in the chapters “Bill’s Story” and “Dr. Bob’s Nightmare.” It is, given that the better part of a century has passed since it was written, brilliantly insightful about many of the fundamentals of addiction. This is perhaps most striking in its framing of addiction as a disease, one that is chronic in nature and associated with changes that for life make most patients vulnerable to relapse. Hence the principle that “once an alcoholic, always an alcoholic,” and the conclusion that only lifelong abstinence can lead to recovery.
3 Besides all the specifics, I find the Big Book quite heartwarming. After all, its fundamental concept is that by joining a fellowship, people can help one another overcome alcoholism and the adversity that comes from it. What is there not to like?
But at the same time, the book is clearly a product of its time. Just as an example, don’t turn to it for a modern view on women and addiction. The first members were only men, and the most prominent notice of women was in a chapter entitled “To Wives.” Likewise, the Big Book was obviously unable to reflect a modern scientific understanding of addiction as a brain disease or take into account evidence from controlled treatment studies. It was, after all, written long before either of those even got started. In fact, to put the roots of the AA movement in context, we need to understand the perception of alcoholism and its treatment in the early twentieth century. At the time this was a condition not only viewed as a moral failing but also thought to be largely hopeless. Beyond supportive care of acute complications such as delirium tremens, the medical profession had little to offer. William Silkworth, the New York physician who repeatedly cared for Bill Wilson and ultimately wrote the foreword to the Big Book, was way ahead of his time when he articulated a view of addiction as a disease. Over the course of successive admissions, he was able to convince Wilson that his drinking problem was not one that came from moral inferiority. Instead, Wilson realized that he suffered from a disease, one that made him vulnerable to what we would today call the priming effects of the first drink, the loss of control that follows, and the consequences of the relapse to heavy drinking that results. But Silkworth had no naltrexone, varenicline, topiramate, or behavioral relapse prevention techniques to offer his patients. In fact, when he wrote the foreword, he was faced with a complete lack of effective medical treatments.
Because of the devastating natural history of alcoholism and the lack of effective medical treatments at the time, Silkworth and the founders of AA had to seek hope in something outside themselves, and outside professional treatment. Similar to countless men and women facing various kinds of adversity in prescientific times, they found it in a higher power. In the case of AA, this is a concept that should be understood very broadly. Compared to most organized religion, the Big Book and the AA movement as a whole are a marvel of tolerance and open-mindedness. They do not favor any specific congregation or religion, and they welcome everyone who wishes to join. But make no mistake: for AA, the key to successful recovery lies not primarily in understanding the addicted brain in scientific terms and then using that understanding to help the brain’s owner recover control of his or her life. Instead the only hope for recovery is seen in admitting defeat and transcending the failings of the addicted brain by turning to the higher power. For those unfamiliar with them, let’s take a look at the twelve steps of AA, which encapsulate this thinking and remain the basis for the movement.
1. We admitted we were powerless over alcohol—that our lives had become unmanageable.
2. Came to believe that a Power greater than ourselves could restore us to sanity.
3. Made a decision to turn our will and our lives over to the care of God as we understood Him.
4. Made a searching and fearless moral inventory of ourselves.
5. Admitted to God, to ourselves, and to another human being the exact nature of our wrongs.
6. Were entirely ready to have God remove all these defects of character.
7. Humbly asked Him to remove our shortcomings.
8. Made a list of all persons we had harmed, and became willing to make amends to them all.
9. Made direct amends to such people wherever possible, except when to do so would injure them or others.
10. Continued to take personal inventory and when we were wrong promptly admitted it.
11. Sought through prayer and meditation to improve our conscious contact with God, as we understood Him, praying only for knowledge of His will for us and the power to carry that out.
12. Having had a spiritual awakening as the result of these Steps, we tried to carry this message to alcoholics, and to practice these principles in all our affairs
One would be hard pressed to find any aspect of this message offensive. But it is also hard to escape its spiritual, rather than scientific, focus. More than half the steps directly speak of a god, a godlike power, or prayer. For starters, that is clearly not for everyone. But that is not necessarily a problem, as long as people for whom this is meaningful and appealing benefit from participating. The question is, then, how do we select those people, and what are those benefits? The answers to these two key questions need to be viewed in the context of a widespread American perception that twelve-step programs are the standard of addiction care.
It is frequently said that people who attend AA for a certain time and beyond do better than those who don’t. The second edition of the Big Book, published in 1955, stated as a rule of thumb that among alcoholics who “really tried” to follow the AA program, “50% got sober at once and remained that way; 25% sobered up after some relapses, and among the remainder, those who stayed with Alcoholics Anonymous showed improvement.” Surveys published by AA since then seem to be roughly in agreement with those numbers. This may sound appealing. But if we think back to the standards by which modern medicine evaluates interventions, things quickly become more complicated. As we have learned, the only way to really determine the effects of an intervention is to carry out a randomized, controlled trial: a study in which participants are randomly allocated to the intervention we want to evaluate or an appropriate control condition. So counting what proportion of people who sign up for AA actually stay in AA does not tell us much. In fact, it has recently been recognized that just by deciding to enter a treatment or a clinical trial for alcoholism, people decrease their alcohol use by as much as two-thirds—whether they subsequently receive active medication or sugar pills.
4 So any specific treatment effects would have to show up as a significant difference between the control group and the active group, on top of the improvement in the controls. When it comes to behavioral treatments in general, it may also be a challenge to find the appropriate control condition. Randomization may not be easy. In the case of AA, for example, it would be very difficult to randomize people so that they either engage with the fellowship of AA or not. Absent that, we are left wondering if the numbers reported really represent an improvement over the natural history of the disease or over some alternative intervention.
Furthermore, even assuming that these outcomes are better compared to not participating, the surveys do not allow us to disentangle what is causing what. To what extent do outcomes that are reported actually reflect effects of AA participation? To what extent are they the result of the fact that people who are better able to stay sober in and of themselves are also more likely to stick with AA? “Really tried” has in the AA surveys often been interpreted as sticking with participation for at least ninety days. But analyzing the data that way brings up a classic problem that evidence-based medicine has had to deal with in all areas of clinical practice. This kind of “completer analysis” has a well-known source of error: it selects people who had inherently better chances of achieving good outcomes anyway. Imagine if you were treating cancer but included in your analysis only people who completed a one-year course of treatment. If people who did not get included had all dropped out because they had a particularly malignant form of the disease and were in fact dead by the one-year follow-up, the outcomes for those who remained in treatment for a year would look great! The same, of course, applies if people with particularly hard to treat addiction relapse within the first three months and drop out of AA participation.
It is well-known that a completer analysis routinely overestimates treatment effects or finds them where they are not really present. If we are evaluating a clinical treatment, there is therefore a known remedy for this problem. Every modern medication study is required to apply this remedy for the results to be considered valid. The FDA would never approve a new medication unless study outcomes had been evaluated that way. That standard is to carry out an “intent-to-treat” analysis in which anyone whoever got the first pill, or attended the first therapy session, is included. By that measure, AA’s own surveys indicate that about half the people who start attending meetings drop out within three months. By the end of the first year, only 26 percent of the intent-to-treat population is still participating. That is very close to the classic relapse rates reported for most addictions, which are around 70 percent over twelve months.
Finally, even if we were able to detect beneficial effects of AA participation in a valid manner, it would be hard to know to what extent they are the result of following the twelve steps. There is no obvious way to distinguish that possibility from generic effects of being in a group of supportive people who share one’s experience as well as one’s goals, and who encourage one to stay sober. Maybe joining a chamber orchestra of recovering alcoholics, practicing Baroque music a couple times every week, and having a festive but alcohol-free meal together on the weekends would be just as good? That is how one of my hardest to treat patients, a university professor, finally achieved stable recovery. But I will never know what in that mix that did the trick. It would be difficult to demonstrate the specific influence of the chamber orchestra participation, the music that the group played, or the Sunday dinners. Or maybe the patient had just reached the point in life when he would have sobered up no matter what, and that in turn enabled him to join the chamber orchestra. Who knows? An individual life is an experiment run without controls.
With these observations in mind, it should not be entirely surprising to read the “Plain Language Summary” of a large meta-analysis published in 2006 by the International Cochrane Collaboration, the gold standard of evidence-based medicine:
The available experimental studies did not demonstrate the effectiveness of AA or other 12-step approaches in reducing alcohol use and achieving abstinence compared with other treatments, but there were … limitations with these studies. Furthermore, many different interventions were often compared in the same study and too many hypotheses were tested at the same time to identify factors which determine treatment success.
5
All in all, this lack of reliable evidence for clinical benefits, obtained through scientifically valid methodology, would be devastating if we were evaluating a professional treatment. It would be worse still if patients or the taxpayer collective were being asked to pay a great deal for it. But neither the former nor the latter is the case. Enlightened AA members would be the first to point out that theirs is not a professional treatment that has as its objective to replace other treatment options. Instead it is simply a fellowship of addicts and recovering addicts who are willing to support each other in achieving and maintaining recovery. There is a mantra that has a lot truth to it: AA is everywhere, and it is free. As such, AA may really be outside the scientific medical paradigm. It does not lend itself well to the type of evaluation that is at the core of evidence-based medicine. In a sense, then, if we view the AA movement appropriately, the data may not be all that critical, as long as AA is not confused with professional treatment.
The bottom line for me is this: achieving recovery from addiction is a daunting task. For a long time, professional medical or behavioral treatments had essentially nothing effective to offer for this devastating disease. To date, treatments that have emerged are with a few exceptions only modestly effective.
6 Even as these treatments improve, people will continue to need support outside the professional treatment setting in order to live lives that are both worthwhile and free of alcohol and drugs. As long as we can work together, communities of people that vouch to provide one another support in staying sober and drug free surely should be a great complement to professional, evidence-based treatments. Perhaps the only valid criterion for whether these mutual-help groups are valuable is whether the people who participate in them feel that they are. When that is the case, we should encourage patients to seek them out. It is much like someone who is overweight, has developed type 2 diabetes, and decides to join a church that promotes a healthy lifestyle, or the Sierra Club and its hiking group. If the patient feels that this is helpful, then we should support him or her to stick with it, while at the same time tightly managing the metformin prescriptions and controlling blood sugar. Clearly AA is a major resource where countless patients find support for a drug-free life. It should be equally clear that, because of its spiritual focus, AA is not for everyone. Other options may be a better match. The same enlightened AA member who points out that AA is not a professional treatment would probably also agree with me in this: while the AA fellowship welcomes everyone with an addiction, it may not necessarily be
for everyone with one.
So over my years in the field, I have taken a pragmatic approach to the tensions that may arise between medical treatments and AA participation. We, meaning the medical profession, do the best possible, science-based medical and psychological treatments currently available. We also work hard to develop new methods. At the same time, we happily introduce or reintroduce patients to AA, a resource we know many have found to be helpful in trying to achieve and maintain recovery. Some patients come back from their first AA meeting and describe an immediate feeling of having found a home. For many among our patients, with broken families, lost jobs, and lives filled with numerous challenges caused by their addictions, that is a big deal. Finding that kind of home may turn into a lifelong source of support. But other patients instinctively turn around in the doorway. There are many reasons why AA may not be for them. Or maybe they just do not feel like they belong, without being able to put their finger on why. That too has to be respected. In those cases we try to find other ways to support and manage long-term recovery. It is really that simple, at least in theory.
I have occasionally run into the typical problems that can come up in reconciling good medical management of patients with their participation in AA or other client groups. For instance, because lifelong abstinence is such a key tenet for AA, and because it is hard for laypeople to understand different effects of chemicals on the brain, many AA groups long viewed psychiatric medications with a great deal of skepticism. In those days it could happen that a patient I had finally been able to successfully treat for a devastating depression would be told by his AA sponsor to discontinue the medication. Sometimes I didn’t even know about it until after the fact. In one case the way I found out was when a patient quickly worsened and attempted suicide. But I have realized that this perhaps wasn’t primarily about AA. There is nothing in the twelve steps or in the Big Book that says you should not have evidence-based treatment for your depression. Except for the steps and the traditions through which members of the fellowship support one another in recovery, AA “does not wish to engage in any controversy” and “neither endorses nor opposes any causes.”
7 No one speaks for “AA.” The views of each AA group are influenced by the backgrounds, education, and attitudes of its members. As public awareness of mental health issues has improved in general, it has done so among members of most AA groups as well. The best approach to these controversies has been to offer patients and their families solid information and invite them to bring their AA sponsors into the conversation. I am sure there are AA groups where these are still controversial issues. I am equally sure there are not nearly as many of those groups as there were when I started in the field.
8So where did things break down with our lawyer? As I said, the spiritual tone of the twelve-step facilitation group did not sit well with her. Understandably, as a convinced atheist, she would have none of the higher-power stuff. She asked for other options. In those days we didn’t have any. She asked to not participate. Some of our staff told her she had to because that was the community rule, and if she didn’t participate, others would soon stay away too. She tried, grudgingly, only to discover that the next group was held by the hospital pastor, who led it in prayer. After that things were beyond repair. The patient was not only a nonbeliever, she was also a fiercely independent person. As such, she did not respond well to having something imposed on her that was so contrary to her core beliefs. As a lawyer, she could not comprehend how a government agency could compel people to participate in what amounted to religious activities. As I listened to her account, I could see her point. I acknowledged as much, but without making excuses, I also tried to explain. Some of our staff were former alcoholics themselves. Although they had to be many years sober to work for us, they brought with them the experience of once having had support in their own recovery through AA, where they remained active members. Yes, it was unacceptable to impose their beliefs on patients, but it really was well intentioned. They just wanted for our patients what had been helpful to themselves.
By the end of our meeting, which lasted almost an hour, I was convinced we had both learned something. I offered to see the patient for a couple of follow-up appointments. She considered my offer of a naltrexone prescription but decided to try and stay sober by sheer power of will. I suspect that by then she may well have succeeded out of pure spite. I let her know I hoped it would work out, but also that she was welcome back if it didn’t. At least it felt like we had worked out the issues that had upset her. After she left I gathered my staff and reinforced the principles I have outlined above. I charged them with creating a better distinction between what we do as medical professionals and what we support our patients in doing as self-help. I also charged the staff with developing alternative behavioral treatment options to the twelve-step facilitation groups so that all patients would have choices available to them that they could feel comfortable with. With that I thought things had been resolved in a way that had offered us all opportunities to grow.
A couple of weeks later, we learned that the NIH leadership had received a letter from someone in Congress regarding our treatment program. As we waited to hear about its content and discussed it with our institute director, I was puzzled. It clearly seemed likely that this would have to do with the recent incident. We had really never had anyone else be all that unhappy with the program. I had parted ways with the patient on a friendly note, convinced that she felt her concerns had been adequately addressed. Had I been so wrong? Was I becoming an insensitive bureaucrat, so that my clinical intuition was beginning to fail me? Finally, my boss and I arrived on Capitol Hill, to be heard by a couple of congressional staffers. As the first questions were asked, we looked at each other. This just didn’t make sense. Then, gradually, we learned about the content of the letter. I will never forget my feeling of shock and disbelief. The complaint had not come from the patient. It had come from one of my nurses, a recovering alcoholic, AA member, and sponsor to a congressional staffer. The complaint was that under my leadership, our program, part of a U.S. government agency, had turned against AA. This was unacceptable. The old routines were to be reinstated immediately, or else our institute would be made to feel the consequences during the upcoming appropriation process.
I was getting ready to argue. I was considering resigning. Fortunately my boss helped me get over it. A wonderful internist, he had grown up in Hungary and somehow always managed to cope with madness by cracking a socialist era joke. We found a compromise solution, emotions cooled off, and we were able to stay focused on our mission. These are not easy issues, nor was this the first time they were debated. Already in 1999, the U.S. Court of Appeals for the Second Circuit ruled that an atheist drunk driver’s constitutional rights were violated when he was forced, as a condition of probation, to participate in a “religion-tinged Alcoholics Anonymous program.” This triggered a fair amount of debate within the AA community. Although there were clearly two sides to the debate, many AA members felt that forcing people to participate runs counter to the core idea of AA the way they know it: a voluntary fellowship of people intent on supporting each other in recovery. I agree and in fact can’t see how any other position could be defensible. And I can’t see how advising patients to discontinue or avoid medications their doctor has recommended based on solid evidence can be defensible either. I hope that these are marginal phenomena or will become so with time. Meanwhile, I will continue to advise patients to try out AA and see if it is for them. My responsibility as a physician will remain to make sure patients get the best treatment data support, whether they feel spirituality should be part of their recovery or not.
The Willmar Hospital Farm for Inebriates was originally built in 1907. It is located in a small town in Minnesota, about a hundred miles west of Minneapolis, in a community that to this day has a population of less than twenty thousand. When Hospital Farm started, it had all of fifty beds. Over subsequent years it went through a series of expansions and name changes. Ten years after first opening its doors, it became the Asylum for the Insane at Willmar but continued to provide care for addicts. Its origins and history parallel those of many institutions from that era, including the mental hospital back in Europe where I took my first steps along the way to becoming a psychiatrist. Today, in the age of community-based mental health, it is easy to be harshly critical of those institutions. A reading of their history certainly makes one appreciate the progress made since those days. Asylums were once, into the late nineteenth century, simply prisons for the insane. They did not offer treatment, because there was none. Instead they practiced incarceration and restraint. Patients were caged, shackled, or put into straitjackets to prevent them from being violent to themselves or others or destroying property. Willmar was built in a time when new ideas about treatment of people who are mentally ill were beginning to emerge. The German physician Emil Kraepelin, the father of modern psychiatry, had published his major work,
Compendium der Psychiatrie, in 1883. In it he argued that psychiatry is a branch of medicine and should be based on careful observation, just like the other natural sciences. There was a new emphasis on diagnosis of specific conditions, and the range of treatments started to expand. Restraints began being viewed as cruel and unnecessary. But it is easy to forget that much of the real progress was made possible only by the arrival, from the 1950s and on, of modern psychiatric medications. Only then did it for instance become possible to discharge chronically psychotic patients into the community. And as we know, it is to this day a considerable challenge to provide enough support for people with serious psychiatric conditions to live and function outside institutions.
Dan Anderson, a clinical psychologist by training, started at Willmar in 1951. As already mentioned, alcoholism was at the time widely viewed as a moral failing. Even as views of other mental disorders started to evolve closer to what we today would consider modern and ethically acceptable, there continued to be little sympathy in the community for the plight of those who suffered from addiction. The disorganized behaviors, the hallucinations, and the delusions of people with chronic psychoses started being viewed as specific symptoms of diseases that patients suffered from through no fault of their own. In contrast, people with addictive disorders were thought to have brought the adversities facing them upon themselves. Even at the asylum, the inebriates were “at the bottom of the patient pecking order,” Anderson is quoted saying in an interview. “Everyone looked down on them, including the community, hospital staff, and even our mentally ill patients. The inebriates had a lower status than the schizophrenics and the manic depressives, or even the kleptomaniacs or pedophiles.” Accounts from those days describe how Anderson, supported by Willmar’s superintendent Nelson Bradley, set out on a mission to humanize alcoholism treatment and “transform treatment wards from snake pits into places where alcoholics and addicts could retain their dignity.” Emphasizing that alcoholics are affected by their disease in ways that are medical, mental, and spiritual, Anderson made the twelve steps of AA the foundation of a new, “multiphasic” approach to addiction treatment, one that was interdisciplinary and attempted to integrate the different facets of the disease.
Based on these principles, Anderson’s model was first developed at Willmar but continued to evolve to maturity at a location about 140 miles to the east, in Center City, Minnesota. This was the location of a farmhouse by a lake, donated by a benefactor in 1949, where things were started off by a staff of three, operating a guest house for alcoholics, with a daily headcount of less than ten. The guest house was not a treatment institution in any traditional sense of the word. The accounts of those days say that there were only a few set elements of daily life, and those would not typically be viewed as professional treatment. The guests were “simply required to behave responsibly, attend lectures on the twelve steps of AA, talk with the other patients, make their beds, and stay sober.” Although this may not sound all that significant, these were the rather humble beginnings of the Hazelden Foundation, and what ultimately became the Minnesota Model. Fully developed through the 1960s, this model spread through the United States and the world in the 1980s and became that most widespread model for addiction treatment worldwide. Well-known addiction treatment centers, including institutions such as the Mayo Clinic and the Betty Ford Center, are patterned after the Hazelden model of care and in fact had help from Anderson and his coworkers in starting up their work. Anderson moved from Willmar to Hazelden full time in 1961 and remained active there until his death in 2003. He first was vice president, then president, and then president emeritus and is essentially the founder and the main architect of the Minnesota Model.
Today Hazelden occupies a unique center spot in the addiction treatment world, in particular in the United States. It has grown into a large treatment center at its original location, with satellites in ten locations across the country, a graduate school, a publishing house, and a research center. From 1996 the Butler Center for Research at Hazelden has given out an annual award in Dan Anderson’s name. I had of course heard a lot about Hazelden through my years in addiction medicine, but when I received the Anderson Award in 2008 and started reading up, I found that my knowledge about the foundation and its history was nevertheless rather limited. As pleased on behalf of our whole research team as I was, I probably did not fully appreciate the significance. Here was an institution at the heart of the twelve-step tradition, actively welcoming and supporting the advances of modern addiction science. Among prior recipients were people I greatly admire. One of them was Stephanie O’Malley of Yale University, codiscoverer of naltrexone treatment for alcoholism, which, as I have indicated, remains controversial to this day with many twelve-step-based treatment programs. Another was Reid Hester from University of New Mexico, coauthor of the book on evidence-based addiction treatment that for me personally had once been an eye-opener, and that had many inconvenient truths to tell the field.
Indeed, the research that had earned us the award seemed quite removed from the core elements of the treatment traditions from which the Minnesota Model has grown. In a paper published in the journal Science, we had gone from a genetically modified mouse model to an experimental study in patients with alcohol addiction and made findings that could possibly represent the discovery of a new alcoholism medication. The emphasis, of course, should be the word “could.” When it comes to diseases of the central nervous system, no matter how good things look at the early stages, only a very small fraction of new medications pan out in the long run. The brain and its behavioral disorders just seem to be difficult targets. After a golden era that culminated around the time of the introduction of depression medications Prozac and Cymbalta and the antipsychotic Clozaril, successes have been few and far between. Because of low return on investment, major pharmaceutical companies have over the past years pulled out from psychiatric disorders one by one. In addictive disorders, their interest had not been all that great to begin with.
With all the caveats, our findings did look quite promising. Mice with the gene for a particular neurotransmitter receptor knocked out did not escalate their alcohol consumption over time the way normal control mice did. They also seemed to have lost their reward from alcohol. In parallel, in collaboration with my longtime friend Don Gehlert and his colleagues at Eli Lilly, we studied an experimental drug that blocks the same receptor. We admitted patients with alcohol addiction to our research unit at the NIH Clinical Center and quickly got them either on the medication, a neurokinin 1 (NK1) receptor blocker, or sugar pills. As is standard in modern medication trials, neither the patient nor the research team knew who received the respective treatment. Once the study was over and we broke the blind, the results were clear. Participants who had received active treatment reported feeling better overall. A couple of weeks into treatment, we had exposed them to an experiment trying to mimic a situation that provokes relapse in the real world. Participants were exposed to a social stressor and then were asked to handle and sniff their favorite alcoholic beverage. They could not drink, but we let them rate how much they craved alcohol, and we were also able to simultaneously measure their stress hormones. Participants who had received the medication reported a reduction in craving and had markedly lower levels of the main human stress hormone, cortisol.
But it was the brain-imaging data that convinced me we may actually be on to something important. Together with a team headed by my colleague Dan Hommer, a fellow psychiatrist and the person from whom I have learned much of what I know about brain imaging, we studied the effects of the new medication on brain responses to positive and negative emotional stimuli. Dan and his group had previously shown that the brains of alcoholics overreact to negative emotional pictures, right in the brain areas known to process negative emotions. Teaming up with Dan’s group, we saw the same highly reactive emotional responses in our placebo-treated study subjects. In contrast, patients treated with the experimental drug did not respond with any such activation. That was exactly what we had hypothesized and hoped for.
Another, unexpected finding was possibly even more compelling. Countless patients have described how, after many years of drinking, normally pleasurable experiences become gray and indifferent in the absence of alcohol. Although somewhat speculative, I think that the signature of this phenomenon was visible in our fMRI maps of the brain. Normally, pleasant visual stimuli are able to activate a network of reward-related brain structures. After many years of alcoholism, that activation was lowered or absent in our placebo-treated study participants, a finding consistent with several studies now available to show that reward responses in alcoholics fade over time. In contrast, these responses were restored in participants who had received active medication for a couple of weeks. Between the two findings described here, of down-regulated reactivity to negative stimuli and restored reactivity to pleasant images, we were most likely looking at the brain signature of a drug that made our subjects feel better and removed their incentives for resumption of alcohol use. This was perhaps a medication that, if it ever made it to the market, patients would actually want to take.
I was to receive the Anderson Award at the annual conference for the National Association of Addiction Treatment Providers in Florida. Carlton Erickson from the University of Texas-Austin, a member of the award committee and an expert on communicating the science of addiction to laypeople, had kindly provided me with comments and suggestions to tailor the talk to the intended audience. With his help I worked hard to avoid the two most common traps that a passionate scientist can fall into on an occasion like this. First, I tried to zoom out from our own research and provide as much as possible of the big picture of developing medications for alcoholism. When talking about the specifics of the things we do, I tried to put them in that broader context. Second, I cut out as many nonessential technical details as I possibly could.
But perhaps most important, I tried to address an issue I anticipated would come up. I knew that the vast majority of treatment providers in the United States are fundamentally committed to the twelve-step model. I also knew that most places, that remains associated with widespread skepticism against the use of medications for treatment of addictive disorders. Given my view of what is needed in the field of addiction, and what kind of research I do, it seemed clear that this topic needed to be addressed. I tried to do so in a thoughtful rather than provocative fashion. Still, as the conference neared, I had nightmares about people getting up to yell at me or leaving the room. But it turned out I could have saved myself the worry. May 2009 came, and I went to Florida. I recall a very kind introduction, and a nice crystal plaque being handed over. The talk went all right, but I have done enough of these to pick up the atmosphere in the room. It was clear that I was somehow unable to quite engage my audience. Afterward there were some of the predictable questions—whether medications weren’t in fact only “crutches,” stood in the way of “true” recovery, and the like. But the theme was not broadly picked up, and then people dropped off. By the time we got to the luncheon, it seemed quite clear that my one-hour lecture was a sideshow. I was puzzled. Clearly there was something here I was missing. I strolled between posters, and they seemed more like a trade show than a scientific meeting.
At the luncheon, when people got up and talked about their programs, it struck me how often success was presented in financial terms. I was seated next to Mark Mishek, at the time less than a year into his job as the new president and CEO of Hazelden. During the course of the conversation, he struck me as a sensible and nice man. Prior to Hazelden he had spent five years successfully running a major hospital in St. Paul, clearly no mean feat. We had a pleasant and interesting conversation. I was of course curious about Hazelden in general, but also specifically about their use of medications. Mark confirmed that only a very small percentage of people leaving their treatment did so with a prescription for one of the approved alcoholism medications. But he also spoke about their work on increasing that share. And he told me that Hazelden was beginning to work with David Oslin, a researcher at University of Pennsylvania, to study the role of genetics for the response to naltrexone. That really was on the cutting edge of science and pointed to the potential for personalized treatment. The study did happen,
9 with support from a donation received by Hazelden. All in all, this was a conversation very different in tone from what I was hearing in general at the meeting, and one from which I came away quite encouraged. But I could not figure out how to put the pieces together. How did this balanced, sensible, evidence-oriented man’s vision rhyme with my other impressions of the treatment landscape—the resistance to any use of medications, the public brushing aside of scientific evidence that supports their use, such as I had seen by the chair of Betty Ford Center just a year earlier on CNN?
Two years later I had finally decided to write this book. Presenting the science was going to be challenging enough, but that is after all my job. What I knew I needed help to understand was the gap between what science tells us about addiction and its treatment, on one hand, and the industry that seems to provide expensive treatments that have little if any support from evidence, on the other. As I started thinking about whom to turn to, Mark Mishek was the first person who came to mind. I sent him an e-mail: Could we please schedule a phone call? Once we got on the phone, I tried to explain my ideas, at that time probably not very well articulated. Mark listened patiently. Then he responded, in not too many words, but in a way that made it clear he not only understood but had been thinking about many of the same things. I explained that it was hard for me to get a real feel for the issues on the ground without experiencing the treatment environment firsthand. Could I please come to Hazelden, spend a week, talk to people, and learn? Mark put me in touch with Valerie Slaymaker, a clinical psychologist and researcher who serves as provost of Hazelden’s Graduate School of Addiction Studies. Training graduate-level addiction counselors is one of the many ways in which Hazelden has for a long time exerted a major influence on the world of addiction treatment in the United States and beyond. Valerie’s interests include addictions treatment research and the implementation of evidence-based practices into clinical programming. She seemed ideally positioned for what I had in mind.
It took nine months to find the right time, but finally we were able to schedule a visit, for which Valerie and her colleagues put together a program.
I leave the simple hotel after an early breakfast. The hotel is located across the state line, in Wisconsin. As I cross the St. Croix River into Minnesota and start the climb up onto the plain, the landscape is glorious. The main road to Center City is closed for repairs, sending me off looking for county road 37 from Taylors Falls. It is a clear day late in September. The morning air, cool and fresh after the cold night, is radiant in the low sunlight. A veil of thin fog is rising from the fields as the soil wakes up, gently brought to life by the sun. The color palette surrounding me ranges from brown earth tones to the gold nuances of the crops, which, being a city boy, I don’t even have names for. Straight roads cut through huge squares and rectangles of fields, looking as if they lead all the way to the horizon. Their straight lines make me wish I could just keep driving for hours, to see where the road might take me. I drive past ruminating cows, unperturbed by the passing stranger and his car. Over it all, a pale blue sky is arched like an endless cupola. On a day like this, it is hard to imagine that winter and snow are only weeks away.
When I arrive at my destination, the first thing that strikes me is the timeless quality of the buildings, and their harmony with the countryside. As I will learn later, the original farm house by the lake, the Old Lodge, was torn down to accommodate an expansion. Only the library that once belonged to Hazel Thompson, the woman after whom Hazelden is named, was preserved, as part of a new building. The place now has more than 150 beds, and close to two thousand people come through here each year with hopes of a new beginning. Then there are the graduate school, the research center, the retreat center, and more. It is clear from the parking lots, the signs, and the maps posted on the street corners that the campus is huge. Yet at the same time it is as if the architects had tried to make the structures part of the landscape. The buildings on the gentle slopes have walls with the same color palette as the surroundings. The architecture reminds me a bit of Scandinavia, with brick walls that may not take on the elements head on but are made to resist them. Indoor walkways connect the buildings, ready to provide safe passage on a less friendly day. Half the people have names like Anderson, Carlson, or something of that nature. I try to joke with one of the women, the program director on the male Shoemaker Unit where I have my client immersion. “If it weren’t for that-and-that letter in the spelling of your last name, you could be taken for a Norwegian, too.” She smiles a wry smile. Yes, her husband’s father did change the spelling. Yes, his family was from Norway, hers from Sweden. But she’d rather talk about the unit she runs, and the people who come through it.
I am an awkward participant in the groups. Without the professional role as a physician or a scientist to hide behind, I am lost in any group of more than three people, anywhere. Here I’m in a group with people who a week ago had never met yet now share stories so personal that they hurt just listening to. Is this about opening up and reflecting, despite the pain that may cause? Is it about seeking the support of others in the group, getting their help to deal with issues that weigh on these lives? Or is it about a moment’s attention that in fact trivializes those same issues, making them into a kind of fleeting reality TV, before life goes on, unchanged? From what I see during my brief time here, for the most part it is definitely about the former. Occasionally, I’m afraid, the latter. Either way, the world of addicts I know, filled with urgency, disease, dirt, remorse, and lost hopes, seems far away. I guess in a way it really is. Not absent, just held at a distance, one that in part is simply physical. I learn that when his life finally came apart one day, one of the clients took a taxi here from the East Coast, on the inspiration of the moment. His trip must have been as stunning in terms of physical distance as it was in terms of contrast. He left chaos and arrived at a highly orderly daily routine.
Much of the time there is an edgy humor to this ordered existence. The unit has a rotating function as “pigmaster,” and those who don’t keep this temporary home clean and tidy get cited on the piglist. In the group session, once the piglist is dealt with, one of the clients, a thin, dark young man gets up and talks about life as a heroin addict on the streets of New York City. The brutality of the tale first seems surreal in these peaceful surroundings. Then, all of a sudden, an exchange starts between the young man and one of the middle-aged alcoholics and quickly comes to a flashpoint. The counselor is masterful in making sure the two men are both heard yet neither of them is hurt or diminished. When the group is over, I am all of a sudden part of a circle of men embracing each other and shouting out the battle cry of the Shoemaker Unit. I try to let go of feeling awkward and join them but succeed only in part. Instead the real meeting happens elsewhere. I join the clients for lunch in the cafeteria. This is one of my nightmares ever since I was a child—eating with strangers, stiffening up, never knowing what to say. To break the ice, I make a quiet comment about just that. A big, blond local farm boy, quiet until now, responds. It quickly becomes clear that he knows exactly what I am talking about, only on a different level. He talks of a glass bubble that surrounded him in high school. About trying it all, starting with meth, just to break out of it for a moment. About finally finding his best friend, alcohol, and how life spiraled down from there. Within minutes a circle of strangers is ever so briefly transformed into a circle of … what? Fellow humans, I guess.
During the course of the week, many people open their doors for me without asking for anything in return. From those people I learn as much as I had ever hoped and more. I learn how, after somewhat shaky beginnings of the retreat for professionals with alcoholism at the Old Lodge,
10 Pat Butler, a local businessman with alcoholism in the family, became the president and put the foundation on a sound financial footing. I learn how Hazelden in the 1960s, with Dan Anderson as the main architect, moved beyond a pure, traditional twelve-step approach, to make treatment multidisciplinary, over the years adding psychological and psychiatric services. From Dan Frigo, now dean of Hazelden’s graduate school, I learn about the great expansion of the Minnesota Model in the 1980s. In those days, he tells me, he worked for a company, one of many that could be hired on a consulting basis to establish treatment facilities, much like how some builders put up standard home designs wherever they go. Most of those treatment programs were purely commercial. None of them were part of Hazelden, which remains a nonprofit foundation. I learn that in 2006, more than two years before I first met Mark Mishek, Hazelden started offering anticraving medications such as naltrexone, and how, from those slow beginnings, about 40 percent of alcohol dependent patients by now leave the program with a prescription for one of these medications. That, I note, is about tenfold better than typically happens in specialized addiction medicine services elsewhere. We also talk about preparations for introducing at least limited duration of buprenorphine maintenance into treatment of opioid addiction, despite the controversy that is likely to provoke in the AA community, because that is what the data support, and because it is unbearable to see patients die in the absence of that treatment. Since my visit, that program has indeed been implemented.
Some things I had been only vaguely aware of become clearer to me. When I first encountered the Minnesota Model, at the time it was imported to Europe around the late 1980s, I noticed that it quickly became oddly controversial. At the time I guess I didn’t pay attention to the details. The impression was that big businesses were all of a sudden willing to pay considerable amounts of money to have key employees treated for addiction, in a way they had never before, but also one that did not entirely make clinical sense to me. The treatment was expensive and offered little in the way of continued management after the pricy month of residential treatment. Combine these two features, and too often an expectation of a “cure” was created, setting the scene for disappointment and cynicism. Meanwhile, social workers and addiction counselors rebelled against the treatment, in ways that did not always seem entirely rational either. None of this made much sense to me at the time, but I was too busy in the lab and elsewhere to learn more. In retrospect, I understand better. For starters, the spiritual tone of the foundation for the Minnesota Model did not go over well in Europe, which is increasingly secular. Combine that with the aggressively commercial pitch, and you can count on conjuring images of mega-church evangelists that enrich themselves at the expense of people who are gullible at best, and vulnerable at worst. That is a brew toxic enough to trigger all the resentment a secular, liberal intellectual is capable of.
Except not much of that really seems very relevant to what I encounter during my visit in Center City. Like any place, Hazelden has to pay the bills. A consequence of going from a bare-bones AA retreat at the Old Lodge to making treatment increasingly comprehensive is obviously that those bills increase. Just the modern medical detoxification unit, where newly arrived clients start out for as many days as they need to, is quite costly to operate. So are the psychiatric consult function and other components of the comprehensive, multidisciplinary treatment. Yet this is unmistakably a nonprofit. When I try to be penetrating with my questions, people instead join me in expressing concerns about how difficult it is to fund addiction treatment, anywhere. To a large extent, this is no different from the challenges confronting anyone attempting to provide health care to people without much in the way of resources. Except in this case, there is not a powerful medical profession aligned with those needs.
I spend some time with Stacy Weaver, the supervisor for the financial case manager group, and one of her coworkers. From them I learn about the battles they frequently fight on behalf of clients with insurance companies but also about the contracts they have over time been able to negotiate with some of the major insurers.
11 In the course of those conversations, we touch on other places that offer treatment, don’t take insurance, and openly cater to a clientele of means only. The Hazelden staff don’t expressly criticize those places, but they make a point of showing me how hard they try to do things differently. I learn about the partial stipends that a proportion of Hazelden’s revenue is used for to help clients offset treatment cost. I learn that a couple of beds are always available for free to county residents, as an expression of gratitude for the support of the local community. We talk about efforts to support parity laws and in other ways advance an agenda of addressing the needs of people with addictions. We talk about the need, meanwhile, to develop less costly treatment options so that more people can have access to treatment. I bring up the need I see to create a continuum of care, one that is built on a recognition that addiction is a chronic, relapsing disorder. No one objects—the issue is high on the agenda—but they point out the shortage of treatment resources when clients return to their communities. There is a fun discussion about opportunities for creating online recovery management tools that in part can help fill this gap and provide support for a long time at a low cost. I get a fascinating look at a program that is being piloted.
I know people who care, and who know their stuff, when I see them. These are good people. Few of them talk about it, but in meeting them, a reference here or a statement there, made in passing, indicates to me that many of those I talk to know the hardships of addiction firsthand. They know how brittle the ice can be on which we walk through life. In most of the conversations I have, there is humility that perhaps has its roots in that fact. On a beautiful autumn day in Minnesota, it is easy to take all this in and be immersed in the serenity of the Hazelden campus. I suppose that is in part its purpose. It is easy to see how this environment fulfills the promise of creating a place to rebuild and give a feeling of dignity to people who were once at the bottom of the totem pole, even at the asylum in Willmar. Today, as I learn, this combines with a considerable degree of openness to science and an ongoing change in practice, driven by scientific data. I discover more common ground than I had perhaps expected, and the feeling is quite powerful. Yet for all the beauty, dignity, generosity, and openness I encounter, my job is to ask the hard questions. I will try to articulate those in the final chapter.