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Flowers in the Bloodstream: one man’s quest to make the prescribing of long-acting antipsychotic injections an ethical obligation 01/19/2012

Posted by ALT in Mental Health News, Mental Health Policy and Inititatives, Pharmaceuticals.
Tags: , , , , , , , , ,

This is an ad I saw in my sidebar the other day.  Look at what they did.  It’s so devilishly clever, isn’t it?

(click image to enlarge)

If you’re a real “psychiatrist who cares,” you’ll talk to your patients about [or, rather, talk them into] a long-lasting injection of anti-psychotic medication – essentially, Risperdal — directly into their bloodstream.

Now some patients are not going to be compliant when it comes to having these akathisia-, diabetes-, tardive dyskinesia-causing, brain-shrinking drugs with [at best] dubious efficacy forcibly slow-released in their bodies for a month.  So Janssen has kindly provided several little educational videos (accessible by clicking on the ad, or here) to help doctors figure out how to do that.

They’re set up to look like academic lectures, and they have nice-sounding titles like “Positive Engagement: Therapeutic Alliance & Long-acting Therapy Given by Injection in the Treatment of Schizophrenia.”  I felt really good after I read words like “positive,” “engagement,” and “therapeutic.”

But then I watched one of them.

It features a man by the name of Xavier Amador, Ph.D. giving a powerpoint lecture designed by Janssen.

Xavier Amador, for Janssen Pharmaceuticals

In it, he explains what is really meant by those lovely words I mentioned above.

Most fascinating is the manner in which he approaches “therapeutic.”  According to Xavier, part of the problem with schizophrenics is that they don’t always agree that they’re suffering from a lifelong illness, that recovery is impossible, and that they need drugs for the rest of their lives.*  They don’t know they’re sick!

There’s a special name for this in psycho-babble – it’s called anosognosia.

Here’s the key: folks who do know they’re sick (again, by the above definition), are the ones most likely to take their medications.  To be compliant.  And so the real role of the “psychiatrist who cares” is to therapeutically convince the patient that he is indeed sick in this manner, and that he should take his meds, preferably via injection.

Dr. Xavier Amador, funded by Janssen, has spent a good deal of his professional career hawking an evidence-based practice (he calls it “LEAP”) guaranteed to do just that.

He goes into greater detail in another presentation, also funded by Janssen, which he gave at a government-sponsored conference in New Jersey last year.

Entitled, “I am not sick, I don’t need help,” the presentation is all about anosognosia, how it “impairs common sense judgment about the need for treatment,” and how overcoming it is “one of the top predictors of long-term medication adherence.” [which he appears to equate with recovery]

What causes anosognosia?  Our beloved Amador posits that it may be

Psychological defense? “Culture” and/or Education?  Or Neuropsychological Defects??

– Xavier Amador, in his presentation “I am not sick, I don’t need help” [emphasis added]

Yes, it is somewhat funny that a self-proclaimed “academic” would stand – in all seriousness – in front of a slide bearing that message.

But as it turns out Amador has been standing in front of silly slides and saying equally ridiculous things for years.

Amador and anosognosia go way back

All the way back to 1997, in fact, when Amador was involved in the trial of Ted Kaczynski, also known as the “Unabomber.”  Kaczynski did not want to mount a defense based on a plea of mental illness or insanity and actually went to great lengths to block his attorneys from doing so.  He maintained that his actions were deliberate, a logical result of his personal philosophy as outlined in his Manifesto and extensive journals (which he stated he kept, in part, to prove that he was not “mentally ill”).  Kaczynski wanted people to understand the motivations for his actions and not have them be discredited as the “ravings” of a schizophrenic – and he was willing to risk the death penalty in order to so.

Nevertheless, a court-ordered psychiatric evaluation conducted found him to be schizophrenic (full text available here – also by court order, so that the public might gain a “better understanding of the Unabomber’s [schizophrenic] motivations”).

That he was found to be schizophrenic really comes as no surprise.  As one of my favorite studies shows, even people displaying no psychiatric symptoms whatsoever have little trouble obtaining that label.

And what were Kaczynski’s symptoms? His “lack of personal relationships,” his “delusional thinking involving being controlled by modern technology,” and (drumroll, please) anosognosia.

Amador, who served as an independent expert for the court, reviewed Kaczyinski’s extensive psychiatric records, neuropsychological test results, and the infamous unabomber diaries. Amador then supplied the court with mounting evidence that Kaczynski’s refusal to be evaluated related to anosognosia, a manifestation of Kaczynski’s schizophrenia.

– from this article on Amador’s anosognosia activism

That one of Kaczynski’s three main symptoms of schizophrenia was his detailed and carefully documented denial of having it and resistance to being labelled doesn’t appear to strike Amador as funny.  I might add that Kaczynski’s other main symptom — “delusional” worries about the all-important role technology seems to play in our society and the isolating effects that understandably follow — has troubled me, and hundreds of thousands of others, from time to time.  Does that make us all sick?

I guess it does if they say it does!

The article goes on to share some of Amador’s initial inspiration to coin and then promote the term “anosognosia:”

It was his experience as a clinician and as a brother of someone with schizophrenia, Amador said, that led him to do research on anosognosia, “which is not to be confused with denial,” he emphasized, although in the beginning, he did not make that distinction. “That’s what I called it when my brother refused to take his medications, and that is what I called it when after his third hospitalization, I found his Haldol in the trashcan,” said Amador.

I suppose there’s no other possible explanation for a thinking, feeling, decision-making, adult human being throwing his Haldol in the trash can.

From a made-up word to the DSM-V: Amador takes anosognosia to the next level

About a year ago, when the DSM-V Task Force was really going at it hot and heavy, Xavier Amador issued this appeal on the Internet:

Dear Friends,

 …Right now, there is no proposal to measure insight in persons with schizophrenia or bipolar disorder much less require that clinicians diagnose a subtype (with or without insight or with or without anosognosia). Such a requirement will drastically change treatment plans and hospital discharge plans. If a doctor has to diagnosis a lack of awareness of illness, then s/he is ethically obligated to address this problem, this symptom, and the non-adherence to treatment it causes. Rather than simply send the person on their way with a prescription they will never fill. I hope you will comment on the website Dr. Torrey recommends below.

We don’t have much time as the deadline for public comments is less that one month away…

Best wishes,

Xavier Amador

[emphasis added]

Doctors will be obligated to ensure adherence to treatment plan…  “psychiatrists who care” must make sure their patients take their meds (perhaps in the form of injection)…

Isn’t that the exact sales pitch Janssen is using for their long-acting injection of Risperdal?

If anosognosia is officially added as a “symptom” of schizophrenia in the DSM-V, it essentially would make prescribing long-acting anti-psychotic injections to folks who “don’t know they’re sick” an ethical obligation!

Sounds like Janssen, and any other pharmaceutical company that manufactures a “flowers-in-the-bloodstream” shot, is going to score.  Big time.

Thanks in part to the presumably very well paid** Amador.

And that’s just one more reason why we need to protest the DSM-V.

Join me in Philadelphia — or do it from anywhere else in the world! — on May 5thin saying “enough is enough.”

*This definition of schizophrenia, though it is endorsed by the APA [American Psychiatric Association] and NIMH [National Institute of Mental Health], is of course completely false.  See Robert Whitaker’s research, and also the work of Loren Mosher, as proof. Also, a few recovery stories as living proof.

**Just how well paid?  We’ll know his exact price in just a couple of months, but for this kind of a score, I’m expecting to see a lot of zeros.

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1. Jen - 03/19/2012

It is apparent that you do not know or love someone who truly has schizophrenia. While I have no doubt that these drugs are over prescribed, they have a useful medical purpose. They are not the holy grail cure, they are the only available treatments at this point in time. My son became ill at 18,with a strong family history of schizophrenia. He is now 27. I have a full life I would like to pursue, rather than caring for a terribly disabled loved one. I was asked to put my son on ritalin by the school when he was young. I refused. I do not take prescription drugs. I am not some drug happy pusher person. I believe psych drugs are WAY over prescribed. But I can assure you, this is not a made up disease. Anyone who can deny the existence of this disease could not possibly know someone affected with it. You say, “I suppose there’s no other possible explanation for a thinking, feeling, decision-making, adult human being throwing his Haldol in the trash can.” My son cannot sleep, eat or bathe, let alone make decisions in his current condition. If you offered him a choice between a ham sandwich or PB&J, he could not decide, let alone even understand what you are trying to say. He vomits all his food up because the demons are poisoning his food. He speaks an unknown language, does not know his own mother, and ran into heavy traffic. He is constantly terrified that everyone in the world is trying to kill him. For a person who possesses any logic to not understand that the brain is subject to disease, as is any other organ in the human body is uninformed stupidity. I hold civil rights very dear and am very liberal. The right to be sick I even understand, but not when someone has no clue what that is. His brain is the control unit of the body, and it now cannot process thought, emotion, or memory. I could not have understood the devastation of this disease until I met it. I have no desire to see millions on anti-psychotics, and am very much against off label use, but for some people these drugs are life saving. The families that give up their lives out of love for an ill loved one are not just imaginative control freaks. This is a REAL DISEASE. It is not a conspiracy theory. If you have a cure for my son, I will gladly give you everything I now or will ever own. You can have my spare organs. I will serve you as a slave for the rest of my life. Just please cure, or even moderately help, my son. Until you have to bathe, feed, and clean up after someone with this disease, you should probably do some serious study on this disease before you spread misinformation. My son has a right to sleep cold and alone on the street and be victimized by those who can see he doesn’t comprehend what is going on around him? Yippee! Maybe your children can have such similar fortune.

2. Jen - 03/19/2012

Sorry, not an angry rant. I am currently in grief. Many of these studies you cite are very old. Schizophrenia is a syndrome, there are different courses to the disease in different individuals. I have no doubt that many people with a schizophrenia diagnosis do achieve complete remission, people who have not been affected by the disease as strongly, or have been misdiagnosed. My son is fairly drug naive, because he refuses the medications. This has not improved the course of the disease. There is no such thing as a Sotera in today’s environment. There is nowhere safe for a person in psychotic crises to go and slowly recover. Psychotic breaks are cyclical, and wax and wane. While I know that these drugs can have terrible side effects, it is nice to talk to someone who can laugh and smile, instead of hide in fear. Look up Tau, amyloid plaques. These and most other neurological diseases seem to show a relation to misfolding of proteins. Kind of a malfunctioning protein building system. The research is completely backing this. It needs explored. I encourage you to do some research into this, and spend some time with those who have remained chronically, disabled and ill. I am a sceptic by nature, but this disease is real. Some are hit harder by it than others. Thanks.

3. Michael Cornwall - 03/20/2012

Hi Jen,
I know you are totally devoted to your son and so I am writing only to offer some possible hope that you may not have been exposed to- and not to be provacative in any way.. For the past 30 years I worked as a therapist with many young men and women like your son with good results over time utilizing an alternative method based on the view of madness held at Soteria and the similar program I worked at. If you like, you can check it out on madinamerica.com by Dr. Michael Cornwall. Their are several blog entries there by me starting with my own experience of madness and then about how an alternative model on the medication-free sanctuary worked. I then worked for decades with folks who were on or refuse meds and still consult pro bono with familes. My orientation is mainly Jungian.
If your son was my client I would be coming over to the house to see him several times a week, we would go for walks if he wanted or do whatever he wanted so i could establish a presence in his life as a non-intrusive, caring other who knows how the psyche takes time to integrate all the emotion and symbolic content that now swamps him.
I understand my orientation is radical, but I thought you may glean something helpful from reading the biogs..

Sincerely Yours, .Michael

4. conscience - 05/09/2012

Schizophrenia: as “real” as Lady Gaga, American exceptionalism and Papal sanctity.

5. Long-acting injections of antipsychotics: pharma can’t shake the stigma, or the data! « freakoutcrazy - 05/31/2012

[…] 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 […]

6. Leigh - 09/23/2012

Dear Ms. Alt-ment,

I might agree with much (or at least some) of what you say – in principle – but your sarcastic tone made it impossible for me to read your blog closely. I understand your disgruntlement, but if you want your message to have the widest, most constructive impact, it might be better to hash out your personal feelings privately, so that the rage does not so distort your good work.

ALT - 09/24/2012

I actually agree with you completely. This is one blog I’m not proud of… I’ve thought about taking it down a few times but the information is good even though the tone is decidedly not. I guess everybody makes mistakes sometimes! If you click around here I think you’ll find that I don’t typically get carried away like this.

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