Dear Dr. Torrey: Please, Stop The Lies!

by MadinAmerica

After reading E. Fuller Torrey’s latest article in the Treatment Advocacy Center newsletter, in which he sharply criticizes Dr. Sandy Steingard for writing about anosognosia on madinamerica.com, and then goes on to attack me for my various writings, I have to confess that this time—after getting over the feeling that my head was going to explode—I thought, my patience with such dishonesty is running out.

As usual, Dr. Torrey has lied to make his criticisms, stating that I wrote things I never did, or completely mischaracterizing the context in which they were written. Thus, my public plea now to Dr. Torrey: Please, stop the lies. Your writings are libelous and slanderous, and–given your prominent public presence–they make it exceedingly difficult for our society to have an honest discussion about the merits of psychiatric medications, and their place in our society.

Here is what you write about me in your latest article.

1. Lie number one. “Whitaker is dead wrong in alleging that schizophrenia is caused by the antipsychotic drugs used to treat it (see Anatomy of an Epidemic.)”

I, of course, don’t allege any such thing. Here is what I wrote in Anatomy of an Epidemic. In chapter six, I reviewed the scientific literature regarding how antipsychotic drugs affect the long-term course of those diagnosed with schizophrenia. In the course of doing so, I wrote about research done in the 1970s and early 1980s that revealed that antipsychotics worked by blocking D2 receptors in the brain, and that in compensatory response to that dopamine blockade, the postsynaptic neurons increase their density of D2 receptors. Two Canadian investigators, Guy Chouinard and Barry Jones, then wrote that this drug-induced increase in D2 receptors made the brain “supersensitive” to dopamine, and thus potentially made patients more biologically vulnerable to psychosis.

This is what Chouinard and Jones wrote:

“Neuroleptics can produce a dopamine supersensitivity that leads to both dyskinetic and psychotic symptoms. An implication is that the tendency toward psychotic relapse in a patient who has developed such a supersensitivity is determined by more than just the normal course of the illness.”

So what am I doing in this passage? I am quoting what researchers concluded from their biological investigations into how antipsychotics affect the brain. So, Dr. Torrey, here is my challenge: Please point to where I wrote in Anatomy of an Epidemic that schizophrenia is caused by the antipsychotic drugs used to treat it.

2. Lie number two: You write that in Mad in America, I described schizophrenia as a term “loosely applied to people with widely disparate emotional problems.”

Once again, let’s go the source.  In chapter seven of Mad in America, I write about the evolution of this diagnosis over the past century, and noted that in the 1960s and 1970s, American psychiatrists—in a form of lousy diagnostic practice—were applying that term to a wide range of patients. I was reporting on criticism of diagnostic practices that had been made by people within the field.  Thus, I concluded at the end of this passage about diagnostic practices at that time, that “people with widely disparate emotional and behavior problems—some anxious, some morbidly depressed, some hostile, and some afflicted with odd notions and bizarre thoughts—were regularly funneled into a single diagnostic category, schizophrenia, and then treated with neuroleptics.” (p. 174, of 2002 paperback edition of Mad in America.)

I was writing in that passage about poor diagnostic practices in the past. Then, in the epilogue of Mad in America, I wrote about the diagnosis of schizophrenia today. (p. 285):

“There remains today great uncertainty over what schizophrenia is, or isn’t. The public has been led to think of schizophrenia as a discrete disorder, one characterized by abnormal brain chemistry. In truth, the biological underpinnings of madness remain as mysterious as ever. In fact, schizophrenia is a diagnosis applied to people who behave or think strangely in a variety of different ways. Some people so diagnosed are withdrawn. Some are manic. Some act very “silly.” Others are paranoid. In some people, the crazy behaviors appear gradually. In others, psychosis descends abruptly. Any well-reasoned concept of ‘madness’ would require teasing apart all these different types and would also require an understanding of how outcomes for the different types—in the absence of neuroleptics—might differ. Yet there is little research in American circles devoted to seeing this more complex picture.”

Again, Dr. Torrey, I urge you to consult your attorney on this. Read him what you claimed I wrote in  Mad in America, that I described schizophrenia as a term “loosely applied to people with widely disparate emotional problems,” and then read him this passage. See if he congratulates you for your accuracy in your summing up—with quotes—of what I wrote.

3. Lie number three: “For the treatment of schizophrenia, Whitaker recommends ‘love and food and understanding, not drugs.’ “

This quote comes from chapter nine in Mad in America, titled “Shame of a Nation.” (Page 214.) In this section of the chapter, I am writing about the history of forced treatment with neuroleptics, and how patient groups in the 1970s organized against it, arguing that it was a form of “psychiatric assault.” I noted that one of their rallying cries was, “We need love and food and understanding, not drugs.” (That quote, if I remember correctly, was taken from a sign at one of their protests.)

Dr. Torrey, I am quite certain that you can see that I am not, in that paragraph, writing about what I recommend as treatment. So, once again, here is my advice: Take what you wrote to your lawyer, have him read this passage, and ask him about the legal ramifications of your obvious dishonesty here.

In an earlier post, I noted that you used this same dishonest, straw-man tactic—misrepresenting what I wrote and then criticizing me for those “writings”—in your scathing review of Anatomy of an Epidemic, also published on the TAC website. Thus, as you meet with your attorney, ask what the law thinks about repeated libel and slander.

There are two other aspects of your latest post that need a response.

First, you write that madinamerica.com is an “antipsychiatry” website. We are not an “antipsychiatry” website. I turned madinamerica.com into a website where people with a variety of backgrounds—psychiatrists, psychologists, family members, social workers, counselors, people with lived experience, etc.—can write about our current paradigm of psychiatric care, and how it might be improved.

The site does give voice to a number of people who are sharply critical of the system, and particularly to people who have been “patients” in the system. Some of those writers are indeed “antipsychiatry.” But if our society is going to have a discussion about how we can build a better system of care, we surely need to hear from the many who feel they have been horribly abused, betrayed, and harmed by our current form of care.

More to the point, though, we also urge our bloggers to write about new treatments and programs that, one hopes, will lead to a more humane and effective paradigm of care in the future. Those writings aren’t “antipsychiatry” tomes; they are writings intent on creating a better psychiatry.

Finally, you criticized Dr. Steingard for writing on our website. In my opinion, her writings are among the most important that appear on madinamerica.com. She writes in a humble, thoughtful, informed fashion about improving psychiatric care, and she does so from the perspective of a physician who works within the system. But in your article—and ultimately this is what is so indecent about it—you try to discredit her through guilt by association.

Honestly, it made me think of the McCarthy hearings in 1954, when Army counsel Joseph Welch asked Senator Joseph McCarthy this ringing question: “Have you no sense of decency, sir?”

Black Hats, White Hats, and Financial Reckonings

by Robert Whitaker

It is clear now that the marketing of ayptical antipsychotics over the past 20 years was, in essence, a criminal enterprise, as the makers of these medications regularly violated the law governing the selling of new drugs. The manufacturers hid side effects and marketed the atypicals for off-label purposes, targeting in particular children and the elderly, and this led to legal actions by both state attorney generals and the U.S. Department of Justice. States sued the manufacturers to recover the millions of dollars their Medicaid programs shelled out for medically unwarranted prescriptions, while the U.S. Department of Justice charged Eli Lilly and other manufacturers with health care fraud under the False Claims Act.

As these legal actions have been settled, the manufacturers have paid large fines. I haven’t kept track of all the settlements, but even a quick Google search tells of Astra Zeneca paying a $500 million fine for its illegal marketing of Seroquel; Bristol Myers Squibb paying $515 million for its illegal marketing of Ability; Pfizer paying $301 million for its illegal marketing of Geodon; and Eli Lilly paying $1.4 billion for its illegal marketing of Zyprexa.

It should be noted, of course, that this illegal marketing of atypicals caused considerable harm. It resulted in millions of Americans, young and old, being prescribed powerful drugs that could cause diabetes and other harmful side effects, even though there was an absence of scientific reason to believe the drugs—when prescribed off-label—would provide a benefit.

However, while the companies have paid these fines for their illegal actions, the executives of these firms have gone unscathed. Instead, during the past 15 years, they were rewarded with stock options and bonuses worth billions of dollars. For instance, when I was researching Anatomy of an Epidemic, I reviewed the profits earned by Eli Lilly executives and employees on stock options from 1987 to 2000 (when the company brought Prozac and then Zyprexa to market), and determined that they netted around $3.1 billion during that period.

Thus, from a financial standpoint, the moral of the atypical story appears to be this: crime pays. The executives at the pharmaceutical companies prospered, and so too the companies. Their illegal marketing of the atypicals turned these drugs into the top revenue-generating class of drugs in the country in 2009, with prescription sales totaling $14.6 billion. The fines could be seen as just a cost of doing business, and actually, as money well spent given that the illegal marketing worked so well.

Now consider the financial bottom line for Jim Gottstein, an Alaska attorney who blogs on this site, and, at one point, released sealed court documents to the public related to Eli Lilly’s illegal marketing of Zyprexa. His financial travails—thanks to a recent IRS decision— continue to get worse.

Here is a little background to this story.

In 2002, when Gottstein founded his non-profit organization, PsychRights, he set his sights on two goals.   The first was to file a lawsuit challenging the state’s rights to medicate patients forcibly, with the goal of making it more difficult for the state to do so. The second was to lobby Alaska’s Mental Health Trust Authority to fund a Soteria-like home, where psychotic patients who didn’t want to take neuroleptics could get residential care and help.

He succeeded in achieving both goals.

State laws governing the forced treatment of psychiatric patients date back to the late 1970s. Typically, courts have ruled that while patients have a right to refuse treatment, antipsychotics are understood to be a “medically sound treatment of mental disease,” and thus hospitals can apply to a court to sanction forced treatment. At such hearings, hospitals regularly argue that if the patient were “competent,” he or she would readily agree to take this “medically sound treatment,” and courts consistently order patients to be medicated for that reason. Thus, patients may have a theoretical right to refuse treatment, but in practice it can be very different.

Gottstein, in his challenge of Alaska state law, made a different argument. In a case known as Myers v. Alaska Psychiatric Institute, he argued that the state could not show, through a review of the scientific literature, that antipsychotics were necessarily helpful, particularly over the long run. Thus, a person might have very good reason to refuse the medication;  refusal should not necessarily be seen as a sign of incompetence.

In 2006, the Alaska Supreme Court agreed. “Psychotropic medication can have profound and lasting negative effects on a patient’s mind and body,” the court wrote in its Myers decision. The drugs “are known to cause a number of potentially devastating side effects.” As such, the court ruled, a psychiatric patient could be forcibly medicated only if a court “expressly finds by clear and convincing evidence that the proposed treatment is in the patient’s best interest and that no less intrusive alternative is available.”

In Alaska case law, antipsychotics are no longer viewed as a treatment that will necessarily help psychotic people.

As for the Soteria project, Gottstein spent years pushing Alaska’s Mental Health Trust Authority to fund such a home in Anchorage. His hope was that it could offer psychotic patients the type of care that Loren Mosher’s Soteria Project did in the 1970s. The Soteria model involved using neuroleptics on a cautious, selective basis, and as Gottstein lobbied Alaska’s Mental Health Trust Authority for support, he once again relied on the scientific literature to carry his argument that there was a sound medical reason to provide such care. In the summer of 2009, a seven-bedroom Soteria home opened a few miles south of downtown Anchorage.

Over the past decade, Gottstein and his Law Project for Psychiatric Rights have waged other battles as well. For instance, the Law Project for Psychiatric Rights filed  a whistleblower lawsuit in Alaska federal court, arguing that Alaska physicians, healthcare providers, and pharmacies committed Medicaid fraud when they billed Medicaid for prescriptions of psychiatric drugs to children for non-approved uses. According to Medicaid rules, the federal government is supposed to provide Medicaid reimbursement only for outpatient drugs prescribed for an FDA-approved use, or for a use supported by a drug compendium (a text that will assess off-label uses of a drug as well.)

Thus, Gottstein argued that healthcare providers commit Medicaid fraud when they bill for drugs that don’t meet this standard. While that legal action has so far failed — the trial court ruled, in essence, that the government is aware of this billing practice re psychiatric drugs already, and thus Gottstein lacked whistleblower status — the case is an example of the many ways that Gottstein has tried to curb the improper prescribing of antipsychotics and other psychiatric drugs to children.

His fight with Eli Lilly erupted in 2006. At that time, while representing a client in a forced medication case, Gottstein subpoenaed documents from Dr. David Egilman, an expert witness in the federal case against Eli Lilly for its illegal marketing of Zyprexa. After Egilman produced those documents, which were under seal in the federal case, Gottstein released them to the public, including the New York Times. (He argued that he could legally do so because Eli Lilly had not objected in a timely way to his subpoena.)

The documents, which federal judge Jack Weinstein later unsealed, detailed some of Eli Lilly’s marketing misdeeds. A little more than two years later, Eli Lilly pled guilty to the federal charges, and agreed to pay a $1.415 billion fine. That fine included a criminal penalty of $515 million, which the Department of Justice announced was “the largest criminal fine for an individual corporation ever imposed in a United States criminal prosecution of any kind.”

The New York Times, in its reporting on Eli Lilly’s guilty plea, observed that the federal investigation had “gained momentum” after Gottstein released the documents in December 2006.

However, by this time Gottstein was fighting a legal battle of his own. Judge Weinstein rejected Gottstein’s argument that he had a right to release the documents, and censured Gottstein for having done so. Eli Lilly then sued Gottstein for having made the documents public, arguing that it had been damaged by his actions.

To defend against that lawsuit, Gottstein has run up a legal bill of more than $270,000. His non-profit, PsychRights, has paid $10,000 of this (since it is under the auspices of PsychRights that Gottstein defends clients in forced medication cases). Gottstein  personally paid $125,000 to the attorneys. Finally, the International Center for the Study of Psychiatry and Psychology, where Gottstein was a board member, set up a legal defense fund for Gottstein, and in 2009 and 2010, paid $16,761.50 to his attorneys.

At this moment, Gottstein still owes his attorneys another $130,000.

But now the IRS has come calling. For unknown reasons, the IRS decided to investigate the Center’s defense fund for Gottstein, and it recently determined that the Center’s fundraising for this purpose was not in keeping with its stated mission. It also determined that it was improper because Gottstein was on the board. For those reasons, the IRS concluded that Gottstein was a “disqualified” person under IRS law, unable to receive such financial help, and thus the $16,761.50 the Center paid to his attorneys was an “excess benefit” to him personally.

As such, the IRS is now demanding that he pay an excise tax of $16,761.50, plus a penalty of $558.30. If he fails to do so within an allotted time, the IRS will double the tax to $33,523. Gottstein is fighting the IRS’s decision in court.

Such is the story of two contrasting financial outcomes, and when I heard from Jim Gottstein of this latest financial setback, I could not help myself from writing a blog that, as my high school English teachers might have advised, sought to “compare and contrast.”

Long-acting injections of antipsychotics: pharma can’t shake the stigma, or the data!

by Alt Mentalities

In honor of Robert Whitaker’s recent kick-ass article beautifully re-affirming the central premise of Anatomy of an Epidemic (namely that anti-psychotic medications worsen long-term outcomes for patients, making schizophrenia into a chronic, lifelong disease when in its natural state it is episodic; and therefore that patients who refuse treatment with antipsychotics are scientifically justified in doing so), I thought we might launch our own little expedition into the stormy seas of antipsychotic/neuroleptic discourse.

I’m steering us straight towards the tempest, towards the ever-blurrier line between “compliance,” “adherence,” and outright “forced treatment,” towards a history of Orwellian language shift that simply can’t seem to shake the truth.

Long-acting injections of antipsychotic medication

Long-acting injections are monthly, time-released, intramuscular injections of antipsychotic medications.  They figure prominently in current “assisted outpatient” therapeutic practice (ie, forced drugging outside the walls of the psychiatric institutions), and are being heavily promoted by drug companies who see expiration dates on patents for oral antipsychotic medications looming in the near future or already arrived.  Can the pharma marketing machine succeed in making LAIs the next wave of antipsychotic blockbuster drugs?

It’s going to take a serious makeover.  You see, long-acting injections have got something of a “bad image” in the press, and in the hearts and minds of the people.  Perceived as brain-altering drugs violently administered to unwilling subjects, clinicans’ last resort to enforce adherence to an un-agreed-upon reality [treatment plan], a hideously efficient way for pharma to make a buck or two [hundred].

But is this really a case of “bad image”, of misperception… or is it an accurate appraisal of long-acting injections’ intended and fully acknowledged clinical applications?

As clinicians we struggle on a daily basis with patients who do not want treatment because they do not perceive that medication helps or because they do not conceptualise their experiences within a medical illness framework.  Long-acting injections have often been used to enforce adherence in patients who do not or will not take medication; they can be a mechanism allowing clinicians to take control.

-Richard Gray, RN, PhD*in “Antipsychotic long-acting injections in clinical practice: medication management and patient choice” [emphasis added]

And furthermore…

According to systematic reviews approximately 40–60% of patients with schizophrenia are known to be partially or totally non-adherent to oral antipsychotic medication. Long-acting injections are indicated where medication adherence is a cause for concern. Thus it is argued by some that it might seem reasonable to consider such injections for approximately half of patients with schizophrenia.

– authors Maxine Patel, Mark Taylor and Anthony S. David** in “Antipsychotic Long-Acting Injections: Mind the Gap” [emphasis added]

Yep.  We had you guys all wrong.  This isn’t about forcing patient adherence to clinicians’ treatment plans, and it certainly isn’t about expanding the market for LAIs.

Funny thing.  “Long-acting injections,” when first introduced in the 1960s, were referred to as “depot injections” … but the name acquired a strong stigma and had to be changed:

Many proponents of LAIs [long-acting injections] have attempted to dodge this [image problem] by rejecting the term ‘depot,’ which was perceived to be stigmatizing, in favour of ‘long-acting injection’ … this was partly an attempt to move away from stigmatizing stereotypes, and also to promote therapeutic optimism for a population for whom hope can be all too scarce.

– Patel et al in “Antipsychotic Long-Acting Injections: Mind the Gap”

As late as 2008, long-acting injections of Risperidone were still being called “depot” injections, but by 2009 articles like the one cited above made clear that this terminology had been abandoned.

But they couldn’t shake the stigma

Not only that, but serious, data-based challenges to the forced administration of long-acting injections –- and, more fundamentally, the existence of any clinical value for antipsychotics whatsoever —  are rapidly multiplying.  As one example:

We are embracing the increased use of outpatient commitment laws that force people to take antipsychotic medications, and we do so under the belief that these drugs are a necessary good for those people. This is an extraordinary thing for a society to do, to force people to take medications that alter their minds and experience of the world.

Yet, here is the story told in Anatomy of an Epidemic: If we look closely at Harrow’s study [citation here] and a long list of other research, there is good reason to believe that these medications increase psychotic symptoms over the long-term, increase feelings of anxiety, impair cognitive function, cause tardive dyskinesia with some frequency, and dramatically reduce the likelihood that people will fully recover and be able to work. If this is so, how can we, as a society, defend our increasing embrace of forced treatment laws?

-Robert Whitaker, author of Anatomy of an Epidemic, in the aforementioned kick-ass essay

From pharma’s perspective, another Orwellian language shift is needed.  Time to reset the dial of public opinion on long-acting injections… and so I give you the newest name for an old terror:

Intramuscular Medication

That does sound better!  It doesn’t make me think of needles.  Doesn’t even sound like an injection… sounds more like a “muscle relaxer,” only more intra.

I first saw the term a few weeks ago in Dr. H. Steven Moffic’s delightful little Psychiatric Times blog entitled “Is it time for Re-institutionalization?”

Recently, I was asked to write a request to possibly extend the outpatient commitment of a patient of mine. What for, I said to myself? This would be a waste of time because he had not exhibited any more dangerous behavior, was taking care of himself, and was compliant with his intramuscular medication. However, when as part of the ongoing monitoring of my patient’s improvement, I asked him to rate on a 0-10 (best) scale how well the medication was working, he said “0”. When I asked why, he said it was because he didn’t need the medication. Uh, oh, I thought. Could this be Anosognosia?…

There’s no way he’ll be committed longer, but will he stay on the medication voluntarily? Without it he’d surely relapse into psychosis and possible dangerousness. If he then went inpatient again, would he only stay a few days, not enough to address his ideas about the medication? It didn’t help enough the first time around.

-Dr. Steven Moffic

But it’s cropping up elsewhere, too – in the academic literature, and in drug company advertising materials, of course.  You can even see the shift in brand names as new antipsychotic injections are approved over time; the earliest approved LAI, Janssen’s Risperdal, is frequently referred to as LARI [Long-acting Risperidone Injection], while the more recently approved Zyprexa injection’s official brand name is “Zyprexa Intramuscular.”

I forecast the increasing encroachment of the term “intramuscular medication” into the official, APA/pharma-approved, “therapeutic” language, until our fears of “long-acting injections” are a half-forgotten nightmare that no longer sees the light of day.

OR

Or we could insist on calling a spade a spade.

So-called “antipsychotics” are nothing of the kind (they’ve actually been shown to cause psychosis), and are much more appropriately referred to by their first given name, neuroleptic, which literally means “brain damage inducing.”  Why?  Because that is what the research proves, over and over again, they do.

From now on let’s choose names that accurately describe the items to which they’re attached.  For example, “rose” = a pretty flower that smells good.  A few other examples:

Intramuscular Medication = Neuroleptic (brain damage inducing) Injection

Non-compliant Patient = Conscientious Objector to the Chemical Takeover of His Mind

That sums it up pretty clearly, doesn’t it?

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* (Oh, and by the way, Richard Gray has received funding and/or fees from AstraZeneca Pharmaceuticals, Bristol-Myers Squibb, Janssen Pharmaceuticals, Eli Lilly, Otsuka Pharmaceuticals and Pfizer.)

** (And it should come as no surprise that the authors have been reimbursed for attendance at scientific conferences and have received consultation fees from Janssen-Cilag and Eli Lilly, received investigator-initiated grants from Janssen-Cilag and Eli Lilly, have worked on two clinical drug trials for Janssen-Cilag, and have received hospitality and advisory or speaker fees from AstraZeneca, Bristol-Myers Squibb, Eli Lilly and Janssen-Cilag within the past 5 years.)