Amazing Victory for Mental Health Activists: NIMH Director Accepts Ideas Once Seen as Radical

Bruce Levine, PhD
10
1982

It is an amazing victory for mental health treatment reform activists and Robert Whitaker. On August 28, 2013, National Institute of Mental Health (NIMH) director, Thomas Insel, announced that psychiatry’s standard treatment for people diagnosed with schizophrenia and other psychoses needs to change.

After examining two long-term studies on schizophrenia and psychoses, Insel has come to what was previously considered a radical conclusion: in the long-term, some individuals with a history of psychosis do better off medication.

Insel finally recognizes what mental health treatment reform activists and investigative reporter Robert Whitaker have been talking about for years—the research shows that American psychiatry’s standard treatment protocol has hurt many people who could have been helped by a more selective and limited use of drugs, and a more diverse approach such as the one utilized in Finland, which has produced the best long-term outcomes in the developed world.

Like many treatment reform activists and Whitaker, Insel does not completely reject the use of medications, but instead calls for a more judicious use of them. Insel concludes:

Antipsychotic medication, which seemed so important in the early phase of psychosis, appeared to worsen prospects for recovery over the long-term… It appears that what we currently call “schizophrenia” may comprise disorders with quite different trajectories. For some people, remaining on medication long-term might impede a full return to wellness. For others, discontinuing medication can be disastrous.

What is amazing about this recent conclusion by the NIMH director is that it means less money for drug companies which, in the past, have heavily influenced psychiatric treatment through their financial clout. Big Pharma has profited enormously from the current standard treatment protocol that calls for lifetime antipsychotic medication after a single psychotic episode. Because of this treatment protocol and the increasing use of antipsychotic drugs for nonpsychotic conditions, antipsychotics grossed over $18 billion a year in the United States by 2011. The antipsychotic Abilify became the highest grossing of all drugs in the first quarter of 2013, and it is on track to gross $6 billion this year (entire corporations that only grossed approximately $5 billion last year include Facebook and Yahoo).

How Did This Activist Victory Happen?

For several decades, a small group of mental health treatment reform activists, comprised of dissident mental health professionals and “psychiatric survivors” (who themselves had received nonproductive and counterproductive treatments) have been engaged in an uphill battle for truly informed choice—that includes multiple options which reflect the diversity of the population diagnosed with schizophrenia and other psychoses.

Dissident psychologists, psychiatrists, and other mental health professionals at the International Society for Ethical Psychology and Psychiatry, patient and ex-patient activists at MindFreedom International, and patients’ rights advocates at National Association for Rights, Protection and Advocacy have not received attention from the mental health establishment or from most of the mainstream media. But they aroused the curiosity of investigative reporter Robert Whitaker.

In 1998, Whitaker co-wrote a series on psychiatric research for the Boston Globe that was a finalist for the Pulitzer Prize for Public Service. The more Whitaker dug, the more he uncovered glaring problems of standard psychiatric treatment. He found a dramatic rise in U.S. mental illness disability rates; research that revealed the failure of standard psychiatric treatment protocols; World Health Organization (WHO) findings that schizophrenia outcomes were much better in India and Nigeria than in the United States; WHO findings of an association between good outcomes and not remaining continuously on psychiatric drugs; and treatment options that were far more effective than American psychiatry’s standard of care. His book Mad in America: Bad Science, Bad Medicine, and the Enduring Mistreatment of the Mentally Ill was published in 2001. And Whitaker did not let go of this story until the mental health establishment was forced to listen.

In 2010, Whitaker’s book Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America won the Investigative Reporters and Editors book award for best investigative journalism. The mental health establishment could no longer ignore him, and so they invited Whitaker to their institutions to speak with the hopes of discrediting him, but they could not do so.

The Research That Convinced the NIMH Director

One of the two major research studies that NIMH director Insel adduced to justify his recent conclusions is a study on long-term treatment of schizophrenia by Martin Harrow, a psychologist at the University of Illinois Medical School. Ironically, Harrow’s study had been rescued from oblivion by Whitaker in Anatomy of an Epidemic — after NIMH and the mental health establishment had buried it. As Whitaker notes:

In 2007, the year [Harrow] published his [15-year] results in the Journal of Nervous and Mental Disease, the NIMH issued eighty-nine press releases, many on inconsequential matters. But it did not issue one on Harrow’s findings, even though his was arguably the best study of the long-term outcomes of schizophrenia patients that had ever been done in the United States.

So, what is so important about the Harrow study for Whitaker — and now, finally, for Insel? In February 2012, Harrow published his twenty-year follow up, “Do All Schizophrenia Patients Need Antipsychotic Treatment Continuously Throughout their Lifetime? A 20-Year Longitudinal Study, which reiterated his 2007 conclusions. Specifically, Harrow found that patients diagnosed with schizophrenia who were “not on antipsychotics for prolonged periods were significantly less likely to be psychotic and experienced more periods of recovery.”

Harrow and his research team had enrolled patients from two Chicago hospitals diagnosed with schizophrenia (as well as patients diagnosed with mood disorders with psychosis) so as to examine long-term outcomes. All of the patients had received conventional medication treatments when hospitalized, and then Harrow followed them as their lives unfolded, periodically assessing how well they were doing. The majority of patients continued their antipsychotic medications, while about a third of them did not comply with medication treatment and stopped taking them.

The 20-year results, like the 15-year results, showed that patients diagnosed with schizophrenia (and those patients with mood disorders with psychosis) who took antipsychotic medication regularly during the 20 years actually experienced more psychosis, more anxiety, and were more cognitively impaired and had fewer periods of sustained recovery than those who quit taking antipsychotic medications.

The psychiatric establishment, after first burying the Harrow study, tried to minimize its importance when Whitaker brought it to public attention in Anatomy of an Epidemic. Prior to Insel’s recent acknowledgement of its importance, the psychiatric establishment claimed Harrow’s study proved nothing because it was a prospective, naturalistic study, not a randomized design. But in July, 2013, Dutch researcher Lex Wunderink and his team published a study in JAMA Psychiatry which used a randomized design, the “gold standard” for research—and Wunderink had similar results as Harrow. The psychiatric establishment had been checkmated.

Specifically, Wunderink reported on a seven-year follow-up of people diagnosed with schizophrenia and related disorders who had experienced a first episode of psychosis. After six months of remission following antipsychotic treatment, the patients were randomly assigned to either maintenance on antipsychotic drugs or a tapering-off and discontinuation of the drugs. Insel himself summarizes the results: “By seven years, the discontinuation group had achieved twice the functional recovery rate: 40.4 percent vs. only 17.6 percent among the medication maintenance group.”

Accompanying the study by Wunderink, a JAMA Psychiatry editorial argues that psychiatry needs to respond to this data and adopt new drug-use protocol:

In moving to a more personalized or stratified medicine, we first need to identify the very small number of patients who may be able to recover from first episode psychosis with intensive psychosocial interventions alone. For everyone else, we need to determine which medication, for how long, in what minimal dose, and what range of intensive psychosocial interventions will be needed to help them get well, stay well, and lead fulfilling and productive lives. These factors have rarely been the goal in the real world of clinical psychiatry—something we must finally address now that we are armed with stronger evidence to counter poor practice.

Finland’s Open Dialogue: A Better Approach Already Exists

While Insel’s announcement acknowledges both the Harrow and the Wunderink findings that Whitaker had worked hard to make known, Insel omits a proven alternative. Open Dialogue therapy in northern Finland has, for more than two decades, provided the kind of treatment that Harrow’s and Wunderink’s research recommends. Whitaker had detailed Open Dialogue in Anatomy of an Epidemic, and he summarizes it in his July 13, 2013 blog, “Harrow + Wunderink + Open Dialogue = An Evidence-based Mandate for A New Standard of Care.”

The Open Dialogue therapy protocol delays the use of antipsychotics in first-episode patients, instead utilizing psychosocial support and selective use of anxiety-reducing benzodiazepines (e.g. Ativan, Klonopin,Valium) with the hope that patients can “chill out,” and get through their first crisis without ever going on antipsychotic medications. And if patients need to go on antipsychotics, the Open Dialogue protocol allows for them to subsequently try to taper from the drugs.

The results? “With this selective use of antipsychotics,” Whitaker reports, “Open Dialogue has produced the best long-term outcomes in the developed world. At the end of five years, 67% of their first-episode patients have never been exposed to antipsychotics, and only 20% are maintained regularly on the drugs. With this drug protocol, 80% of first episode patients do fairly well over the long-term without antipsychotics.”

The Harrow and the Wunderink studies, Open Dialogue, and the lives of many ex-patient activists dispel the myth that people do not fully recover from psychotic states. The reality is that people can experience long-term recovery, and for many of these people, rejecting standard psychiatric treatment has been their salvation. It is good news for them and the rest of us that the director of NIMH has finally acknowledged this reality.

10 COMMENTS

  1. Bruce, thanks for spreading the word about this!

    “Ironically, Harrow’s study had been rescued from oblivion by Whitaker in Anatomy of America—after NIMH and the mental health establishment had buried it.”

    I’ll have to check this book “Anatomy of America” by Whitaker, somehow I’ve missed it. 😉

  2. Thank you for summarizing this all so clearly. You did an excellent job and a piece here that can easily be shared, forwarded to those either unaware or skeptics. Finally, there’s some crack in the iron clad “medical model” which pharma has been in complete control over . Sad to think that with all the personal testimonials by survivors who tell their stories that the yweren’t being heard, listened to, by the majority of doctors, even with their living real life examples ! What I’ve been noticing is that since Whitaker has been on the road with his speaking engagements, he has coasted doubt in some, now with Insel ackniwledgment there may be some actual movement and change in practice by the prescribers. I’m hopeful the doctors will unite and start to at least put together new protocols for using anti psychotics, it’s at least a start! Meanwhile, I think Insel is still going to focus NIMH dollars on medical research to contine the search to support brain disease as the answer. Something tells me he hasn’t converted

  3. “Something tells me he hasn’t converted” No kidding!

    As a parent of a young adult with coping problems it seems the last place I’d seek help is at NAMI. Review their website and you will see they are heavily biased toward medication for life.

    Here is advice off a link from the MA NAMI website.
    http://www.reintegration.com/reint/family/family.asp
    “Help with medication compliance, sticking to a medication regimen is the cornerstone of successful treatment of schizophrenia, and most people with schizophrenia must take medication for the rest of their lives to control the symptoms.”

    Is this true? Is this advice routine for psychosis? Does treatment keep you in treatment? Just wondering.

    I hear this morning, on meet-the-press, from the head of the NRA that our mental health system is a mess. No kidding! But who’s going to draw the line between the sane and the insane. Joseph Campbell in some of his work says we are all at times near that edge. Watch the news videos on the gun law protests and you will for sure wonder where the edge actually is. Is a person protesting with an assault rifle sane? I cringe when the solution to a problem is passed on to another problem, especially making gun control a mental health issue.

    Can NIMH play a part in drawing this line? This is an important question as the events of the past week open new discussions.

    Yes this is a rant. The real problem is in the fact or to the degree that we perceive there exists a mental problem. Both for those with the problem and for those that think others have problems. We all must find the fun in life, we must find the fun in all we do, and we need to stop trying to medicate our way to it or we will all be on medication.

  4. I am afraid that, like Warmac, I am skeptical. Thomas Insel has been Director of NIMH for 11 years, and the evidence was there for most of that time. I do agree that the reason he has “discovered” the clear findings now is thanks to the unrelenting evidence provided by activists and the reaction to Anatomy of an Epidemic. That book was so well constructed it was impossible to ignore.

    However, what he has conceded is that some people do better over the long run if they do not take neuroleptics as a permanent solution. One worries that his concession will keep us off guard, and it may be years before we notice that nothing has changed in NMHI beliefs about prescribing to first episode people, nothing new has been added in terms of options available, and worst of al nothing has changed in who gets research grants and the type of research done. Research in the area of serious “mental health” issues has been blatantly slanted to the pharma agenda or decades. It is a crime how much has been spent while a huge body of solid, ground-breaking research just did not happen.

    So, yes this is an important breakthrough, forced on an unreceptive audience. But, this is no time to let up the pressure to ensure that the implications of the knowledge are reflected in NIMH future actions and recommendations.

  5. Martin Harrow and Thomas Jobe’s research is to be commended. It is a game changer. Harrow and Jobe have worked quietly in the trenches for over two decades, foregoing no doubt— lucrative careers in industry and/or medicine.

    Until recently Harrow and Jobe’s research and scholarship was utterly dismissed by pharmaceutical companies, and their formidable public relations personnel.

    David and Goliath 2013.

    Harrow and Jobe’s work is remarkable and inspiring.

  6. I don’t think Insel’s comments are a bit different from when drugs came in favor over lobotomies; the industry simply now has something that will serve them more effectively. He certainly is not promoting Open Dialogue. He likes implants, shock & psychosurgery. He did indeed completely restructure NIMH’s granting infrastructure to focus on biological brain research emphasising those three areas of study- and NIMH is THE funder of higher education & the nation’s research scientists so I can see where this is going and it does not look so rosy to me.