Thursday, September 26, 2013

Political opportunities and Thomas Insel’s response to the Wunderink study

In the past, when responding to various public statements from psychiatry’s leading figures and their cheerleaders in the media, I’ve tended to focus on the spin – the obfuscation and misleading assertions they’ve used to negate the impact of the significant admissions they’ve found themselves compelled to make. This has especially been the case with Thomas Insel, both because he’s an absolute master of spin (really – it’s quite impressive) and because as he’s the head of a government agency his utterances have – or potentially have – important consequences.

So when I read Insel’s post about the Wunderink study, this was my immediate focus and how I planned to write about it – “more spin from Insel.” But Robert Whitaker’s response to Nancy Andreasen’s comments and Bruce Levine’s post about the Insel article have led me to change course a bit. I think they get it (mostly) right. We need to cover the spin, but approaching these statements from the perspective of political opportunities is equally important.

Previously, I quoted from Whitaker’s comment in the thread at the Mad in America post about Andreasen* in which he emphasized the significance of her reaffirmation that neuroleptic drugs lead to brain shrinkage. That comment came in response to some others suggesting that Mad in America was selectively focusing on the grudging admission and naively ignoring all of the bogus claims under which it's buried. As one commenter wrote:
I’m starting to think that MIA has a hear-what-you-want to hear mentality when interpreting these articles.

The summary on MIA:
Oh no, the drugs cause brain damage. We’ve more than verified it; should we stop using them?

What the article actually says;
Schizphrenia causes brain damage. The longer the relapse/psychosis the more the damage. It’s a problem that patients and family members interpret the article she published years ago as reasons to quit taking the drugs. The drugs emptied the aslyums and even though they have side effects, “they have fewer side effects than some of the other medications we use.”

Same old, same old.
It’s true that the article is for the most part the “same old, same old.” And Insel's piece is full of similarly infuriating distortions and misinformation. Insel describes “schizophrenia” as a mental disease/disorder, when he knows it’s an invalid construct. He refers to neuroleptic drugs as “medicines” and to their use as “treatment.” The following paragraphs give some flavor of the spin:
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.

We realize that for too many people, today’s treatments are not good enough. New, better treatments are essential if we are to improve outcomes for all – that is the promise of research. But in the meantime, we need to be thoughtful about the treatments we have. Clearly, some individuals need to be on medication continually to avoid relapse. At the same time, we need to ask whether in the long-term, some individuals with a history of psychosis may do better off medication. This is a tough call, where known risks need to be balanced against potential benefits. As the RAISE project has emphasized, shared decision-making between patients, families, and providers is essential for long-term management of psychotic disorders.
He asserts that some presumably significant number of people “[c]learly…need to be on medication continually to avoid relapse” and that for them “discontinuing medication can be disastrous” when these are not conclusions reasonably drawn from the data. He presents the very question answered in the studies he’s discussing – “whether in the long-term, some [or all – SC] individuals with a history of psychosis may do better off medication” - as one yet to be asked. He assumes there needs to be long-term “management” of these (now plural, note) alleged disorders. He talks about shared decision-making, when the reality for people on the receiving end of these diagnoses is often anything but participatory or consensual….

But, like Whitaker’s response to the Andreasen reaffirmation, Bruce Levine’s new article at MIA, “Amazing Victory for Mental Health Activists: NIMH Director Accepts Ideas Once Seen as Radical,” emphasizes what’s new and significant about Insel’s remarks. Focusing on the same paragraphs I just quoted, Levine concludes:
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.**
Despite what the last paragraph suggests, Levine notes below that Insel “omits a proven alternative,” referring to the Open Dialogue approach in Finland, while choosing to focus on the RAISE project.*** But Insel's and Andreasen’s admissions about the drug research and its potential meanings, as Whitaker and Levine suggest, aren’t negligible.

These sorts of public statements are similar to others witnessed in recent days and months: Obama’s acknowledgment last year of a change of heart concerning same-sex marriage, for example, or the Pope’s recent remarks, or the IMF’s admission of its inaccurate and self-serving (pseudo)scientific assumptions and apology to the Greek people, or, indeed, the announcements we saw from Insel and from David Kupfer in May. There are a few different ways of approaching these statements, and they’re by no means mutually exclusive.

First, we can focus on what the statements say – positive and negative - about the people making them. After reading Whitaker’s clarification, some people thought Andreasen should be “applauded” for her public acknowledgment of the drugs’ effects. Others continued to deem it “too little, too late” and to point to the grudging and misleading nature of her statements. These discussions are valid and useful. I don’t think anyone should be telling people, especially those who’ve been harmed by a person’s or an organization’s past actions, that they should congratulate those making such statements; encouraging people to forget about a person’s or an organization’s other harmful actions because of them; prodding people to start regarding these individuals or organizations as allies; or suggesting that they put aside their anger in the name of “moving on.” I believe that discussion, with all of its anger and bitterness and other emotions, should happen, but we shouldn’t stop there.

Second, we can try to analyze what these pronouncements might mean beyond the words - in terms of policy shifts or institutional changes. As one of the commenters at Levine’s post says:
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.
This is also a valuable approach. Trying to gauge whether a statement like Insel’s might portend a significant change of course for his and allied institutions requires knowledge of the history of the institution and of the individual.**** It requires skepticism - avoiding overly optimistic assessments and unwarranted pessimism, especially when they could lead to a diminution rather than a reinforcement of activism.

Third, we can consider these admissions or announcements of changed ideas in terms of political opportunities: what do they mean in terms of changed possibilities for the movement? Or better, since opportunities can be missed, how can we use them in pushing for further change? As the commenter I just quoted concludes about the Insel article: “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.”

I think this idea is what’s behind Whitaker’s and Levine’s responses at MIA, and it’s a useful approach. It encompasses the first two approaches, because understanding how best to make use of political opportunities***** means understanding the character and trajectory of the people and institutions you’re dealing with. But it also changes the calculus. Taking advantage of political openings like the ones provided by these announcements means potentially pushing forward personal and institutional changes of course that wouldn’t otherwise happen or would otherwise take much longer. Thus, it counters a negative tendency of the first two approaches used alone - to fall into a fatalistic mode of seeing transformation solely or primarily as the result of elite choices and actions.

This combined approach provides chances to examine (and celebrate, and give credit for) what the movements have been doing to bring about these successes, and to think about how best to adjust the movements to the somewhat changed landscape and exploit the new openings. How are these statements and the institutional shifts they might indicate useful in legal cases, at the UN, in writing, in dealing with the media, in protest actions, in pushing for policy changes,…?

*I have to quote the last comment in that thread, just because I love it:
Yes “we” should stop using psychiatric drugs. Psychiatry is suffering from “Münchausen syndrome by proxy” when it prescribes or forces psychiatric drugs into their patients .

Definition of MSbP or MBP “a caregiver deliberately exaggerates, fabricates, and/or induces physical, psychological, behavioral, and/or mental health problems in those who are in their care.”
**It's worth noting that outcomes in the "developed world" are not generally better than in other places; in fact, they're decidedly worse.

***“The Recovery After Initial Schizophrenia Episode (RAISE) project combines low-dose medication with family psycho-education, supported education/employment, individual resilience training, and other interventions to focus on more than just the psychotic symptoms.4 Combining current treatments, as done in RAISE, looks like a promising approach.”

****This can involve understanding the internal dynamics in the organization, awareness of groups that might be pushing for change (and against it) in the organization, and so on.

*****I do recognize that I'm stretching the concept of political opportunities pretty far beyond its meaning and use in the sociological literature, but it's the same basic idea and this isn't a journal article so I really don't care. :)

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