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UPDATE: Sorrell vs. IMS Health heard by Supreme Court as an issue of “commercial free speech,” NOT health information privacy 04/28/2011

Posted by ALT in Mental Health News, Pharmaceuticals.
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[For information about this case – which concerns the data mining of health information for script-tracking purposes – click here…]

The Supreme Court heard arguments in the case of Sorrell vs. IMS Health on Tuesday, and made it clear from the outset that the court did NOT consider this case to be an issue of health information privacy.  Rather, as the lawyers representing pharmaceutical and health information data mining companies hoped, they were treating it as an issue of commercial free speech.

WHAT??

Chief Justice John G. Roberts, Jr., said the Vermont law that restricts the sale and use, for drug-marketing purposes, of data drawn from doctors’ prescription blanks had the purpose of barring drug companies’ sales representatives from seeing doctors to promote their company products…Justice after Justice — especially Antonin Scalia — asserted that the state was simply trying to intervene in the marketplace for drugs to promote a message that it liked and to block one that it did not like: that is, the sale of brand-name drugs.

“Let’s not quibble over what the purpose is,” Justice Scalia said.  It is, he insisted, to set up an impediment to drug company “detailers” contacting the doctors, whose prescription information they had gathered by data-mining, to sell the companies’ own products.

(from the Supreme Court of the United States [SCOTUS] blog coverage of the court proceedings)

Maybe I’m missing something here (it’s been known to happen), but based on my reading of the law, it doesn’t stop the detail men [pharmaceutical salespeople] from contacting the doctors; it simply cuts back on the “insider” information about that doctor’s specific prescribing practices the detail man will have.  They’ll know a little bit less about which diagnoses the doctor favors, for example, or whether he is more apt to prescribe brand name drugs or generics.

But they’ll still be able to make use of all their other sources of information – tips from the nurses and secretaries about his favorite kind of wine, his preferred local sports team, facts garnered from numerous conversations with the good doctor (facilitated in part by a free lunch dangled under his nose)…

There being, of course, no such thing as a free lunch.

Another thing I’m missing: how is this case not about health information privacy?

The New York Times coverage of the case plainly states “The case is not about patients’ privacy rights, as individual information about them is meant to be stripped from the data.” 

But just removing an individual’s name from a data set is not always enough to ensure confidentiality, especially in rural areas (LIKE VERMONT) where there may only be one or two people with a specific diagnosis or health problem and script-tracking is a longitudinal practice – IE, individual patients’ prescriptions are tracked over years via the same “anonymized” ID number.  As the New England Journal of Medicine [NEJM] stated in its amici curiae in support of Vermont’s Prescription Confidentiality Law:

Advances in computer science have compromised extant security techniques, “casting serious doubt on the power of anonymization” and lesser de-identification technologies.  These problems are especially acute in rural settings.  In Vermont, “in small communities identifying a drug prescription can equal the release of the individual’s diagnosis.”  Data mining exposes a patient’s prescription history, and thus, their underlying medical conditions, to publication and exploitation, allowing companies to match prescriptions with specific patients.

(from the NEJM amici curiae brief in support of the Vermont Prescription Confidentiality Law)

This isn’t just idle speculation; actual instances of this have been documented in the media (and you know how far behind the ball they are!).  Check out this 2008 Business Week article [“They Know What’s In Your Medicine Cabinet”]: it documents the stories of several Americans who were denied insurance coverage based on their prescription histories alone, obtained – of course – by script-tracking.  Supposedly confidential, anonymized, untraceable to individual patients.

Good thing Supreme Court justices are privately appointed for life!  Otherwise, this blatant show of support for pharma would’ve just lost all 9 of them my vote in the… upcoming … election.

OH GOD; NO. Not another presidential election; I’m still trying to get THIS image out of my head:

Health Information Privacy Case goes before the Supreme Court today 04/26/2011

Posted by ALT in Mental Health News, Pharmaceuticals.
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Data-mining.

It’s a pretty new concept (made possible by all the highly advanced, really cool technological gadgets that have made our modern lives so much easier – or so we’re constantly being told), and in the context of health information, it is part of a process that weds private and public groups and interests in ways that may leave individuals in the dust and feeling – well – violated.  Privacy not being one of the “interests” reflected in the process…

   

The Process:

The government mandates (or encourages) all kinds of health data collection for “quality assurance,” regulation, and safety.  IE, “for your own good” – on a massive scale.  That data may very well be used by the government for the purposes stated, and as long as the government itself owns that data, it’s protected, constitutionally.   The government can deny access to private parties without any accusations of violating “free speech.”

But here’s the rub: for about the past 30 years, privatization of all things/agencies governmental has been the name of the game.  So while it used to be true that government-collected data stayed in the hands of the government, that’s no longer the case.  More and more often, governmentally collected data is falling into the hands of a privately contracted data firm (of which there are many), and thereby falling into a gray area.  Who actually owns it?  Who can sell it?  Who must give their consent before a sale occurs?  And what (if any) are the penalties for using data for purely commercial purposes unrelated to the original rationale for its collection? 

As is usual with relatively new terrains, only recently accessible thanks to rapidly changing technology, there are very few legal answers to these questions. 

What I’m trying to say is this: nobody’s thought to bring a canary into the Orwellian abyss that is data-mining. 

Whoops!

Which makes the successful navigation of such ethical considerations exceedingly difficult (the lack of morals of the parties involved – large corporations who want to a. sell private data or b. capitalize on private data to SELL MORE STUFF – doesn’t help, either).

  

Is it too late?

Have we missed the boat?  Is privacy now officially a museum piece (a little dusty, one more vestige of the “good old days” to be encased in glass for viewers to ponder after paying a small admission fee)?  Have the rights to keep silent and withhold personal information from corporations been eroded beyond repair?

No, it’s not too late; I believe we still have a chance.

And my belief is being put to the test today, actually, on the floor of the Supreme Court, where the honorable justices are hearing the arguments in the case of Sorrell, et al. v. IMS Health, et al.

The basic facts: The government requires close monitoring of prescriptions by pharmacies – for safety purposes.  However, it’s long been a practice of pharmacies to also sell some of that required information, specifically the info regarding which doctor wrote the script and for what, to data-mining (“health information”) companies.  This is a major source of revenue for pharmacies.  [The AMA also collaborated in this process of selling individualized information to data-mining companies – by licensing information contained in its “Physician Masterfile” to them…] *

The data-mining companies then turn that info right around, creating reports on individual doctor’s prescribing habits – and sell those to pharmaceutical companies.  Pharmaceutical companies than use this insider information (what doctors are more apt to prescribe generics, for example, or which doctors are especially prone to diagnosing patients with “bipolar disorder”) to individualize their sales pitches and increase revenues from sales of brand name, “new” drugs. 

The advent of script-tracking (as it’s called) revolutionized/vastly improved the efficiency of drug salesmanship.  As one former Pfizer drug rep, Michael Oldoni, describes the phenomenon:

Oldoni says that script-tracking also changed the way that reps thought about prescriptions… with script-tracking reports, reps started to feel a sense of ownership about prescriptions.  If their doctors started writing more prescriptions for their drugs, the credit clearly belonged to the reps. 

“Script tracking, to me at least, made everyone a potentially successful rep,” Oldoni says.  Reps didn’t need to be nearly as resourceful and street-savvy as in the past; they just needed script-tracking reports.  The industry began hiring more and more reps, many with backgrounds in sales (rather than in, say, pharmacy, nursing, or biology).  Some older reps say that during this period the industry replaced the serious [ie, data-driven] detail men with “Pharma Barbie” and “Pharma Ken,” whose medical knowledge was exceed by their looks and catering skills… Whatever was left of an ethic of service gave way to an ethic of salesmanship.

(from Carl Elliot’s White Coat Black Hat: Adventures on the dark side of medicine.)

Up until a few years ago, doctors were not asked their consent by pharmacies – the information was shared without it (and often without even their knowledge).  Thus, most were unaware of the familiarity the drug company’s “detail men” had with their individual practice… and detractors argue were therefore missing out on a huge bias in the detail men’s presentation of the “data” about the wares they were hawking.

In 2007, the state of Vermont decided to implement some legislation [the Vermont Prescription Confidentiality Law] to regulate – actually, in a very small way – this free trade of what many consider confidential medical information.  Essentially, they required that pharmacies obtain the consent of doctors before selling information about their prescribing practices to data-mining companies.

What do you know?  Most doctors, when given the choice, did NOT consent to having their prescribing information sold to third parties.

Pharma: "But... we thought we had you 100% in our pockets!"

Several very important entites’ pocketbooks were threatened… and all hell broke loose.

Fast forward to 2011: the case is before the Supreme Court.  Those in favor of the law argue that is an issue of keeping sensitive health information confidential – those against the law (pharma and the “health information” companies) are countering that their First Amendment Rights to freedom of [commercial] speech have been violated! 

It seems like a no-brainer; the detail men are still allowed to pitch the drugs in any way they like, using all the hyperbolic language in the world… they simply don’t have quite as much privileged information about the weak points of the specific doctor they’re addressing their sales pitch to.  How is this a violation of their freedom of speech?

Fingers crossed that the justices will see it this way as well.


*Elliot, C. (2010).  White Coat Black Hat: Adventures on the dark side of medicine.  Boston: Beacon Press; p 61

The Obamas’ anti-bullying campaign is totally uncool 04/21/2011

Posted by ALT in Children's Mental Health, Mental Health Policy and Inititatives.
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The Obamas – as parents! as people! – want to put a stop to “bullying” (their role as partners in presidential crime helps, too, I suppose).  They take this issue pretty seriously, in part because even Barack [president of the United States of America!] has had some personal experience with it.

  

I cant imagine why!

Was it the youth suicides that got the Obamas’ attention?  [Or, rather – the media’s sudden heavy focus on them; check out this telling quote from one anti-bullying article: “Suicide rates among children Carl’s age [11] are very low… but they are anecdotally ‘creeping up.’” IE, the numbers on youth suicides look about the same, but the media stories about them are increasing exponentially, complete with the standard celebrity poster children and cautionary tales calculated to horrify parents.]

So were the Obamas just watching television, passively absorbing onscreen images and shrill warnings, or is their concern born of some critical thought on the “bullying issue”?

Maybe they’ve been pondering the gradual usurpation of parental rights and responsibilities – including the parental right to love your child unconditionally, to give of your talents and natural wisdom unreservedly and without censure or institutional intervention – by social “services,” replacing these priceless gifts with pre-packaged, standardized “skill sets” that are about as wholesome as a bag of Cheetos.  

Perhaps they’ve given some thought to the general climate inside compulsory, industrialized schools: one of discrimination, separation, classification, and judgment?  Because an atmosphere that breeds [institutionalized] bullying about as efficiently as a tropical cesspool breeds malaria-infested mosquitoes is certainly worth consideration – if what we’re after is an actual effort to decrease the pressures of coercion, marginalization, and psychological abuse on our nation’s young people.

Inside sources remain silent about the nascent stages of the Obamas’ concern… so we’ll just have to judge by the content and quality of the anti-bullying campaign they’ve spawned.  Is this whole thing based on an earnest consideration of some of the root causes of “bullying” – or something else entirely?

  

Something else

A key component of the Obamas’ anti-bullying campaign is its website, stopbullying.gov, which is – how should I put this? – what a 40-year-old graphic designer would think is a hip, youthful, whimsical stroll through basic bullying awareness  information.  We’re talking graffiti-esque fonts, asymmetrical scribbles, a hip-hop oriented theme song [which kids can download as a ringtone for their cell phones(!)], etc.

Totally uncool. 

Kids can spot adults trying to “relate” to them in this synthetic, insincere fashion from a mile away. 

[I remember a hilarious syphilis awareness video we were all forced to watch in my high school health class with a similar “hip” aesthetic.]

Phil the Spot was the butt of many a joke...

  

And this aesthetic – out of touch and totally insincere – is a perfect symbol for the fundamental disconnect the whole campaign has from the real issue of bullying.  Take for example the section of the website for kids (Take a Stand/Lend a Hand), featuring a cartoon series, games, quizzes, and the aforementioned hip hop theme song. 

The cartoons seem to be the main attraction; there’s at least 8 episodes available for viewing on the website. Young people are told:

KB, Josh, Milton, and their friends are kids like you who are taking a stand against bullying.

(from the “Take a Stand/Lend a Hand” Stop Bullying Now! website; emphasis added)

Do these look like kids to you??

No.  They look like freaky, mutant, humanized animals – so typical in children’s television programming and so… foreign.  I guarantee you that most kids do NOT relate better to humanized animals in cartoon format than they do to real human beings; but that seems to be the dominant impression.    

I could only stomach one story line, so I went for the one about KB – a smart muskrat mutant who loves science and soccer, and is teased by a feline prepster named Cassandra with numerous body piercings.  And how does KB deal with the bullying she endures?   Not by telling her parents.  Not by confronting Cassandra.  Actually, she doesn’t do anything at all. 

No; the problem is solved by the machinations and manipulations of her science teacher (some kind of crossbreed between stork and monkey, I think…).  This stork-like creature notices that there’s some bullying going on, and then he deliberately pairs KB with a member of Cassandra’s clique, because he just knew that they would turn out to be friends.  KB’s new friend sticks up for her, and the bullying magically ceases.

Not only is the storyline downright impossible, it’s about the most disempowering and disrespectful message about combating bullying that I’ve ever heard.  “Kids: you can’t handle this.  There’s nothing you can do to stop people from treating you like crap.  So, let the authority figures take care of it.  Like magic, everything will work out exactly as the benevolent adults want it to!  Never mind that they don’t plan on consulting you at all about the outcomes of their interventions, or assessing the long term consequences of their manipulations (you’ll be in another grade, and perhaps another building, by that time; out of sight, out of mind).”

This theme is repeated over and over, and is especially prominent in the recommendations for educators section of the website.

I repeat: totally uncool.

   

Policy Recommendations

As the email signature of one of the social workers in my professional life says:

If you are ready to criticize a system, be equally ready to offer assistance to improve it.

(Arnando Sanchez, as quoted on the bottom of a social worker’s emails.  Tellingly, the other quote she includes is “people don’t resist change… they resist being changed.”  But that’s a story for another day.)

What would a truly effective campaign to put a stop to bullying, addressing the issue’s root causes, look like?  Stay tuned… ALT’s got some good ideas cooking and won’t disappoint.

“This I Believe” 04/15/2011

Posted by ALT in Historical Context.
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The 1950s in booming, post-war America was a different time.  Maybe some of you were alive then – but for me that period is one of many historical eras (the fall of the Roman Empire, the French Revolution) that I have experienced only through textbooks and Hollywood representations. 

I think we all know how accurate these historical dramas can be.

  

And here’s the funny thing about history books and Hollywood: somehow, by conveying only the “important” events, the “relevant” information, they cut the trajectory of time into chunks (eras/epochs) that seem rather unconnected, making it almost impossible to answer the question “how did we get here [the present day]?”  They tell you almost nothing about the lived experienceof that time, what it meant to be human – and how that translates to the now.

This disagreeable feeling of isolation and ahistorical existence in an epoch preceded by other bounded, objectively defined “epochs” – cut off from the wisdom and slowly stockpiled intellectual stores of generations and forced to rediscover it all, independently, in one lifetime — contributes, at times, to the grayed out feeling of industrialized depression that plagues my “modern” consciousness. 

Which explains, in part, why I find This I Believe so very compelling.

The basic premise: from 1951 to 1955, famed radio journalist Edward R. Murrow hosted a CBS radio program called This I Believe.  Each show featured one person’s 300-500 word essay, a positive statement of an individual (as opposed to dogmatic) belief that formed the basis of that person’s life.  Essayists were celebrities, sometimes [like Jackie Robinson, Helen Keller, Maria Von Trapp] – but more often they were just folk; taxi drivers, high school teachers, homemakers. 

The original call for essays asked explicitly for personal and affirmative statements of belief, “the values which rule your thought and action.”  The historical importance of the project was anticipated and understood from the very beginning:

We are sure the statement we ask from you can have wide and lasting influence. Never has the need for personal philosophies of this kind been so urgent. Your belief, simply and sincerely spoken, is sure to stimulate and help those who hear it. We are confident it will enrich them. May we have your contribution?

(from the original invitation for This I Believe)

The show was a huge success – it was syndicated on air and in print around the world, and a 1952 book containing 100 of the show’s most popular essays was outsold only by The Bible.

Though how many housewives bought the book just for the picture of a very foxy-looking Edward R. Murrow on the inside cover -- we'll never know.

   

But after four brief years, that window into the philosophical lives and lived experience of Americans closed.  Time passed; one bounded epoch ended and a few more came and went.  The original voices of This I Believe found themselves relegated to the pages of history books and museum glass.

And then, in 2005, the window opened again.  NPR [National Public Radio] revived the program, using a modified version of the original prompt.  Again, the responses came from all walks of life, and all ages, too.  From first graders to folks old enough to remember the original program well.  Best of all, every response – from the 50s and more recently – is stored on the project’s website.

GO.  You may get lost (I know I did!), but what a privelege to wander there, and in such good company.  What a wealth of wisdom, experience!  I can’t stop reading them, each one a priceless snapshot of one, individual human.  Part of what makes them so personal is the real voice of the author speaking directly to you (any of the essays that made the show were read by their authors, and these recordings are saved on the site, too).  But mostly it’s the content: a human being with some years of life on this earth is expressing – in 500 words or less – the single most elemental, important piece of wisdom they’ve gained thus far.

I loved this one.  I found this one to be wise and compelling in its simplicity.  This one was downright inspirational, in an old-fashioned, “American Dream” kind of way (and I believed I had fallen to complete and utter cynicism about such things long ago!).

It feels unbelievably good to partake of a history that’s not a boot in your face (a lá Orwell); that’s not particularly epic or grand but is magnificent just the same.  Magnificently ordinary, a relatable history of folk.  Wholesome, nourishing, and strangely rare in this modern world, like fresh-picked garden vegetables on a summer evening.  It reminds me of what we’ve lost, and how — just by scattering a few seeds and letting nature do the rest — we could claim it again as ours; and righftully so!

It’s a mad, mad, MAD world! A countdown of this week’s top headlines 04/08/2011

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3.  Artificial Dye Safe to Eat, Panel Says

(New York Times; 3/31/2011)

This is a little confusing.  You see the lead to this article says:

There is no proof that foods with artificial colorings cause hyperactivity in most children and there is no need for these foods to carry special warning labels, a government advisory panel [FDA] voted Thursday.

(NYT article “Artificial Dye Safe to Eat;” emphasis added)

But the article goes on to explain that the agency convened this hearing in the first place because of a report issued by FDA staff scientists concluding that children with behavioral disorders might have their conditions “exacerbated by exposure to a number of substances in food, including, but not limited to, synthetic color additives.”

(The FDA report also concludes, however, that “the effects on their [hyperactive children’s] behavior appear to be due to a unique intolerance to these substances and not to any inherent neurotoxic properties.”  Ok… but what about this study?  And this literature review?  Not exactly stellar work on the part of the FDA staff scientists.)

So let me get this straight: artificial dyes are totally safe to eat.  Oh, yes — they may “exacerbate” (not cause; heavens, no!) symptoms of hyperactivity in some children, but this is not the fault of the dyes and chemicals.  It’s the kids’ fault, for being “uniquely intolerant” to these substances.  Since it’s the kids’ own genetic fault, no warning labels or other restrictions are needed. 

"Sit in the corner, you!"

And as NYT columnist Gardiner Harris points out, without artificial dyes many foods – like Cheetos – just wouldn’t be that appealing to people anymore.

Without the artificial coloring FD&C Yellow No. 6, Cheetos Crunchy Cheese Flavored Snacks would look like the shriveled larvae of a large insect. Not surprisingly, in taste tests, people derived little pleasure from eating them.

Their fingers did not turn orange. And their brains did not register much cheese flavor, even though the Cheetos tasted just as they did with food coloring.

“People ranked the taste as bland and said that they weren’t much fun to eat,” said Brian Wansink, a professor at Cornell University and director of the university’s Food and Brand Lab.

Naked Cheetos would not seem to have much commercial future.

(from NYT column “Colorless Food? We Blanch”)

She's right. They look delightfully... larvae-esque!

The world would be a “duller place.”  People would end up eating a lot more whole foods, whose naturally-occurring colors are nature’s advertisement for nutritional value.

Yeah.  That would be bad.

   

2.  Second Grade Boy Pepper Sprayed by Colorado Police in Class

(ABC news; 4/6/2011)

8-year-old Aidan Eliot became distraught at school, spit at teachers, ripped a piece of wooden trim off the wall and threatened to hurt his teachers with it.  Asked later if he intended to hit them with his weapon, he said “kind of.”  Police called to the scene pepper-sprayed the boy. 

A few interesting things to note:

- This incident occurred in the Lakewood School District, home of Columbine High School.  That’s right, the very same high school where troubled youth taking anti-depressants opened fire on their fellow students 12 years ago.

- Aidan’s mother mentions that she has tried numerous medications for Aidan but “none of them have worked.”  The multiple news stories don’t mention whether he is currently taking medications, or recently/abruptly withdrawn from them – but it seems rather pertinent, don’t you think?

- Aidan’s mother also mentions that Aidan only seems to have behavioral problems like this at school.

I think there is a problem, but it’s with school and Aidan.  It [serious behavioral problems] only happens at school.  It doesn’t happen at soccer.  It doesn’t happen at swimming.  It doesn’t happen with babysitters, family members.

(Mandy Elliot, mother of Aidan Elliot)

What is it about industrialized school that causes children to become so very upset?  As always, I’ll recommend John Taylor Gatto’s answer to that question

Dehumanization weighs heavy on a young one’s soul.

   

1.  Masturbation May Help to Relieve Restless Legs Syndrome

(AOL news; 4/7/2011)

With yesterday’s FDA approval for a “new” Restless Legs Syndrome [RLS] drug (really just another recycling of gabapentin), RLS is suddenly all over the news.  What is it – a real disease or marketing ploy?  If it is real, how many people actually suffer from it?  [Translating this into the market analysts’ language, how many potential consumers of Horizant™ are there?]

But then there’s this new theory, being posted all over the internet, that masturbation could be a “natural cure” for RLS.  Scientists [EXPERTS] say orgasm causes a dopamine release in the brain, just like most RLS drugs on the market which are dopamine agonists (they, too, facilitate dopamine release).  Sure, their methods are a little suspect – they’re basing this all off of one, singular case study.

The scientists also submitted this highly technical, very official-looking chart of their data.

But this is a mere “natural cure” they’re investigating.  No need to get all scientific with it, using multiple subjects and something even resembling a protocol!

This article is problematic because it fits into a dominant frame story about natural cures – the idea that they are pseudoscientific, marginal, and in some way connected with deviant behavior (ie, masturbation).  A comparison between this “natural cure” and the pharmaceutical/mainstream cure is going to make pharma look very good indeed. 

Fact of that matter is, there are lots of non-chemical ways to address sleep disturbance (whether you want to call that RLS or not is up to you) with excellent research to back them up.  By focusing on this ridiculous example instead, that body of work is side-stepped.  The only remaining option is a pharmaceutical one – and whether you pick the dopamine agonist or gabapentin, you’re going to be up against some nasty side effects and probably more medications to address them.

LOOKOUT – “new” drug for Restless Leg Syndrome is the 5th incarnation of a pretty nasty chemical, indeed 04/07/2011

Posted by ALT in Mental Health News, Pharmaceuticals.
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Today, the FDA approved a “new” drug (Horizant) to treat restless leg syndrome

Remember – the NIH [National Institutes of Health] equates akathisia, a torturous and potentially suicide- or homicide-inducing inner restlessness and distress with “restless leg syndrome,” a mild nuisance only.  [As the NIH puts it, “not dangerous or life-threatening, and it is not a sign of a serious disorder.  However, it can be uncomfortable and disrupt your sleep.”]

This misrepresentation is particularly troublesome because akathisia is a common (and again, very serious) side effect of antipsychotics/neuroleptics, both atypical and older generation.  It’s so common it’s even acknowledged in the DSM-IV.  Akathisia can cause torturous mental disturbances, suicidal ideation, and homicidal impulses.  It can be misdiagnosed as “anxiety” and medicated with ever-increasing doses of benzos.  It can be misdiagnosed as “psychosis” and medicated with ever-increasing doses of antipsychotics (the very thing causing it – this is what happened to Gianna @ Beyond Meds, for example).

Or, the psychiatrist can insist that the akathisia is actually just restless leg syndrome (with the full blessing of the NIH), and prescribe one of the medications approved to treat it, most of which are dopamine agonists. 

So let me get this straight: someone is prescribed an antipsychotic (dopamine antagonist).  This person experiences a dangerous side effect, akathisia, but is told it is merely a “nuisance” side effect – restless leg syndrome – and is then prescribed a dopamine agonist to “treat” this side effect.  Let’s guess what happens next: the two drugs oppose each other, and our hero is told that higher doses are needed, so he dutifully consumes ever-increasing quantities of these expensive, patented drugs.  And pharma smiles upon it.

      

Paradox: the “new” restless leg syndrome drug is something different… and yet more of the same.

Something different: Meet Horizant.  New restless leg syndrome drug on the block.  Patients “will have greater comfort with Horizant” than the other treatments for restless leg syndrome because it’s not a dopamine agonist.   It’s going to be safer.  It’s not going to have as many side effects.

And it's going to be orange. Which (no joke) has been proven to be the color which provokes the strongest placebo effect in Americans.

   

And with an “estimated 10% of Americans suffering from RLS,” [yeah right] it’s going to make ol’ XenoPort (the manufacturer, loosely connected with GlaxoSmithKline) a lot of money.  Somewhere between $200 and $500 million.

More of the same: Horizant’s chemical name is gabapentin.  Heard it before?  You might have, because it’s actually previously been patented four separate times, as four separate drugs

The most famous of which is Neurontin. 

Neurontin, approved only for the treatment of epilepsy, but aggressively prescribed off-label for all manner of things, including bipolar disorder, migraines, chronic fatigue syndrome, etc.  Estimates are that 90% of prescriptions for Neurontin were written off-label.  This just doesn’t happen by accident; it should come as no surprise that in 2004 Pfizer ended up pleading guilty to two charges of off-label marketing and paying $430 million in fines. 

To make matters worse for Pfizer, several lawsuits are currently underway involving people who were prescribed the drug off-label to treat bipolar disorder and then attempted or committed suicide. 

Attempted or committed suicide?  But, that sounds like akathisia!  This drug doesn’t cause akathisia, too, does it?

Well, it’s not a listed side effect, but “shaking of a part of your body that you cannot control” is.  [Incidentally, “seizures,” “strange or unusual thoughts,” and “unwanted eye movements” are other listed side effects – all of these represent illnesses that previous incarnations of the drug supposedly treated.]

So there you have it: no matter how you stack it, the drug causes the very thing that it supposedly treats.  Definitely “more of the same.” 

Gabapentin is also commonly used in addiction medicine; specifically to “treat” withdrawal from methamphetamines, alcohol, and cocaine (known as the “Prometa protocol,” this treatment plan –which combines medication and therapy — is patented and people have to pay just for the right to follow the protocol, not to mention for the drugs and therapies themselves).  Gabapentin is also used to reduce the severity of benzodiazepine withdrawal syndrome.  Too bad it, too, has a pretty rough withdrawal syndrome.  Lots of folks exit rehab, not free from addiction, but simply with a different, more socially acceptable addiction to gabapentin.

   

So what do we say to ol’ XenoPort and their projected $200-$500 million profits?

Shame on you.  Shame on you for calling this drug “new” and “safe” when, in its previous incarnations, gabapentin was known to be very addictive, with some pretty intense side effects, including suicide. 

Shame.

Magnolias 04/07/2011

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Spring at last!

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GUEST POST: A reader’s story of psychiatric adversity and ultimate triumph! 04/06/2011

Posted by ALT in Guest Post, Recovery Story.
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[Submitted by a reader, in response to the ALT_mentalities "Open Invitation"]

My Story

As a child, I was described as “dreamy” by a lot of my teachers. “So bright, so sweet. I wish I could have ten just like her in my classroom. But she doesn’t seem to be paying attention,” they would say to my parents. At the same time, my mother noticed that I did a lot of repetitive movements known as “tics”. I didn’t know I was doing them. As a registered nurse, this concerned her, so she videotaped me one day as I was ticcing and gave the tape to a neurologist, who brought me in to give me a full neurological exam. I thought it was kind of fun. He pulled my arm down and asked me to resist him. He asked me with a smile, could I stand on one leg? Could I show him? How about the other leg? Did I know my ABCs? Could I recite them for him?

Afterward, he told my mother that there was nothing physically wrong he could find with my nervous system, but that my tics in the video were suggestive of autism. Also based on what my teachers had said, he referred us to a psychiatrist. I don’t really remember the psychiatrist, but he ended up diagnosing me with ADHD (Inattentive Type), and PDD-NOS (a mild form of autism). I was prescribed a stimulant, though which one I’m not sure. I did eventually take both Adderall and Straterra (not at the same time).

As I progressed through the grades, school became less and less fun for me. Being around other children in a crowded classroom was sometimes hard for me, with all of the background noise and disruptions. My social skills were not as developed as some children’s, and this became very noticeable in middle school, when I became somewhat of a target for bullying. I got into a fight with a friend, and she instituted the full “silent treatment,” refusing to speak to me at all.

Freshman year of high school, my parents decided to put me in a small private school. The classes were smaller and quieter, and the teachers knew me well. I got very high grades and joined sports teams, earning the Scholar-Athlete award. But my home life was not as good. My parents were arguing a lot, and separation was discussed. My father and older brother got into loud and intense fights, a few culminating in one calling the police on the other. My brother was abusive to me, hitting me, choking me, smothering me with a pillow. When I was 12, he had sexually abused me. I did not tell anyone this. He had also been diagnosed with autism and ADHD, given stimulant medication, and when he hit one of his teachers at school, diagnosed bipolar and given Depakote. This made him reclusive and gain a lot of weight, which I brutally teased him for as a small way to “get back at him” for hurting me. Looking back, we had almost the same psychiatric/drug history, but we reacted in entirely different ways, which we also used as a way to cope with our intolerable home life. He became abnormally aggressive, I became abnormally anxious.

Toward the end of my freshman year, my only friend drifted away from me and sought the company of others. Depressed over the memories and the family situation I couldn’t tell anyone about and very anxious over schoolwork and lonelieness, I began restricting my food and exercising.

Sophomore year, things continued going downhill. I became extremely perfectionistic about everything, and paradoxically the constant anxiety got so exhausting that to protect myself I pretended I didn’t care about schoolwork, procrastinating yet still agonizing over homework and assignments and berating myself for being “lazy.” I became very depressed, and when I told my mother tearfully that I didn’t want to live anymore, she took me to see my family doctor, who suggested anti-depressants. I had read up on them and asked them about the warning that these drugs increased suicidal thoughts in those under 18. “Don’t worry about that,” my mother and doctor said, and I trusted them, so I took the medicine. I also started seeing a therapist. Sometime after I started taking the meds, I got my first strong urges to cut myself. When I did cut for the first time, I cut far more deeply than I’d intended, and experienced my first dissociative episode, looking at the deep wound on my arm with detached amazement (demonstrated by my first thought after I saw it: “Wow, those movie guys are good. It looks just like makeup on a horror movie.”). When I couldn’t get it to stop bleeding, I got my mom, who immediately figured out what I had done and brought me to the ER. A kind British doctor numbed the area and gave me 12 stitches altogether while a pysch consult was called. It was determined I could go home after I signed a safety contract stating that I would not harm myself again.

Just a little while after my ER visit, I was caught self-harming at school and my parents brought me to a private psychiatric hospital, where I was admitted to their Adolescent Inpatient Unit for violating my safety contract. The psychiatrist I had been seeing to manage my psych meds saw me in the hospital, and I tried to be honest with him and the other hospital staff. I thought they could help me feel better and relieve some of my suffering. In the grand scope of things, they really added to it. I wasn’t allowed to have my textbooks (they could be used as weapons, said the staff), so I got behind in school. I was strip-searched upon admission (very distressing) and had to wear paper clothes (humiliating). I missed my parents. If I was on Unit Restriction (not allowed to leave the locked unit whatsoever), I was trapped in a twenty-foot hallway 24 hours a day and became bored and frustrated. I was kept for about 5 days the first time, discharged, and then re-admitted two weeks later, again for self-harming. The doctors decided I was your run-of-the-mill severely depressed person.

My parents didn’t see any significant change in me from the hospitalizations and decided that wasn’t the best route. I became more secretive about my self-harming, hoarding sharp objects in a hiding place in my room and cutting in places easily covered by a t-shirt and jeans. Meanwhile, I saw my psych regularly for med changes/increases, going through Zoloft and Lexapro (which gave me a severe allergic reaction involving a painful red rash), before settling on Cymbalta, which apparently “worked”. All of these medications made my suicidal thoughts worse, but it’s hard to tell if they increased my anxiety or gave me akathisia, as I was already so anxious and restless before taking them. I had strange dreams and intense nightmares. I told my best friend’s father about her pot smoking one night as I was afraid she would drive while intoxicated, and this lost me basically all of my friends. They gave me the group-wide silent treatment and spread rumors that I was a lesbian. A group of boys picked on me, twisting my words and laughing at me at lunch. I began having violent fantasies about bringing a gun to school and making all of those who had hurt me “pay.” I was horrified at what I was thinking, and thought I was an awful, unforgiveable person for wanting that, so I became more intensely suicidal. I didn’t tell anyone, least of all my parents or doctors, because I knew that would mean going straight back to the hospital.

Near the end of sophomore year, I was admitted to the hospital’s evening outpatient program for one last try, since I had failed to complete it twice (once for being admitted inpatient, once for a reason I can’t remember). I became frustrated for a reason that is lost to me now, so I got up and walked out of the outpatient building and ended up wandering along the highway, looking to get hit by a car to self-injure. I was stopped by the group counselor who drove after me and brought me back. My mom was called and told by the counselor that there was really no choice, that I had to go back inpatient. Now forced into the hospital against my will rather than nervously going in to please my parents and doctors, I took advantage of my knowledge of the unit’s inner workings to rebel any way I could. I hid my plastic fork from meals in my pants pocket and self-harmed with it, so staff modified all of my meals and took away my silverware so I had to eat with my hands. I took advantage of the fact that I didn’t have to do anything all day and stopped eating. Staff figured out I had an eating disorder and put me on bathroom restriction; I could not leave the dayroom for two hours after meals despite not eating anything. I grew progressively weaker and lost more weight, by the end of my stay they were threatening to strap me down and tube-feed me. I attempted to escape as a staff member unlocked the door to pass through, so staff decided to solve this problem by keeping me there all day long while the other patients left for art therapy. It was a game of tug-of-war where one side is much stronger than the other, so I eventually gave in. The only good thing about this stay was finally confessing to my mother about my brother’s abuse. This was the last straw for her so she decided to move out of our house and take me with her. After I was discharged, she rented her own apartment and I went to live with her.

I started my junior year at a public highschool. This year was pretty uneventful, in that nothing happened that hadn’t already been happening: Grades were bad and getting worse, suicidal thoughts, urges to do things like throw myself off the side of escalators at the mall, self-harming, eating issues, intense anxiety, seeing my psychiatrist, therapy, and generally lying about how I was. The jarring dissonance between how I pretended I was in my life and how I actually felt and thought caused my self to split into two parts, Black and White. They constantly argued about what do to: Eat or not eat? Tell what I’m thinking or not? Cut or not? Again, I told no-one, afraid they would think I was psychotic. I withdrew from basically all social interaction besides my parents. I had friends at school, but any attempts to contact me outside of school usually fell through; I was just too anxious and exhausted to go out with them. Eventually, they stopped asking. I got a job at the end of that year at my parents’ insistence and worked part-time.

My first semester of senior year I was still officially classified as a junior; I hadn’t passed enough classes to advance a grade, so I re-took a lot of courses and a freshman history class so I could graduate. I reflected bitterly on this a lot (If I was as smart as every teacher I’d had insisted, why had I ended up being held back?). I resented my Cymbalta and saw it as a “stupid crutch” and stopped it cold-turkey a few times. This gave me fun things like electric-shock sensations in my brain so I would always go back on it. I showed symptoms of post-traumatic stress: Flashbacks, more nightmares, and being easily startled. My mom would touch my arm to wake me in the morning and I would bolt awake with a gasp. I dated a very kind boy throughout the year, and grew to genuinely love him, but I was distant to him because of my problems and he didn’t understand why. I realized I had zero energy for anything besides barely getting through the day and broke it off with him. At the end of the year I was told I had to either finish a large amount of work or I couldn’t graduate. I looked at what I had to do, went to my counselor and said, “I’m done. I’ve had enough.” My counselor protested, but I convinced him and my parents and they let me drop out of high school.

I got on full-time at my job and started seeing a new therapist, Dr. S, who I liked very much. The first thing she said to me was: “I’m here to suggest things that might help you. If you think it won’t help, if you have any doubts about what I say, tell me right away and we’ll go in a different direction.” This was completely unlike what I had been told over the years. She listened to what I had to say. I eventually trusted her enough to give her a list of all the abuse that I remembered happening (it was too hard to talk about out loud), and I told her about Black and White. She did not call me psychotic, she confirmed what I had suspected all along: they were split parts caused by trauma and keeping the secret of that trauma.

What happens next is where things get simultaneously weird, terrifying, and awful. I debated not including this part, because most people would think I had completely snapped (the professionals certainly thought so), but the narrative wouldn’t make sense if I didn’t include this next paragraph.

Other people in my head (it’s the best way I can describe it) started coming forward. They weren’t split off of me, they were completely separate. The trouble was, we shared the same brain and to an extent, they felt what I felt, so when I felt anxious, suicidal, and so on, they did too. I fed off of them in a never-ending cycle until none of us were sure exactly whose was supposed to be feeling what. More people appeared–men, women, teenagers, adults, children, with a complex network of politics and ways of interacting with each other. I thought I had Dissociative Identity Disorder (formerly Multiple Personality Disorder), as this was the only possible explanation for what was going on.

In any case, the chaos from this latest development finally pushed me over the edge. I was suicidal as usual, decided to go to sleep and see how I felt in the morning, felt no better the next day, and overdosed on my Cymbalta in a daze. Once I had swallowed everything it hit me what I had done and I reluctantly (I thought I was “bothering them”) called 911. Paramedics came and brought me to the ER. My upset parents were called and I was given charcoal to drink. My parents called my boss and said I would need an emergency week off. Once I was stable, my psychiatrist ordered me to be transferred by ambulance to the same psych hospital I’d gone to years ago. Only once the paramedics had escorted me inside were intake papers presented to me and I was told I had to sign myself into their Adult Inpatient Unit now that I was 18 (a clever tactic indeed–I was already there, they could easily force me in if I refused). I signed in voluntarily so that I could theoretically sign out again whenever I wanted. I learned that this wasn’t really true–technically I could leave whenever I wanted, but the doctor could either change me to involuntary or if he let me go, insurance wouldn’t pay for my stay and I would be stuck with tens of thousands of dollars of medical expenses.

So I went onto their Adult Acute Unit and got admitted. A tech and one who was being trained took me back to a room for my strip-search. The trainee took notes while the other tech said, “You have to look for stuff they hide in places like…,” and she approached me and basically put her gloved hands down my pants and up my shirt, groping and feeling me all over. They had never done this on the Ads Unit (they mostly just had you pull up your shirt and pull down your pants), so I struggled, but she just moved with me and I gave up. Then the trainee pulled out the familiar paper scrubs one wore on suicide watch and I changed into them in full view of the two techs. The Acute Unit was full of people who were career mental patients, but even though we were considered the sickest, we were still allowed to go outside for “outdoor breaks.” Patients primarily used them to smoke, and though I didn’t smoke, I went out for the fresh air and something to do. I confessed to the professionals about the other people in my head and diagnosed “Bipolar w/ Psychotic Features.” Despite my suicide attempt, it was hoped that this was my first and last “psychotic break” so I was just given a “mood stabilizer” (Zyprexa) and sent home.

I spent the next month utterly without hope. I worked a low-level, dead-end job, I had dropped out of high school, I had dropped out of college (I had been going to take classes at the community college, but forced to cancel before I started), and now all of my managers at work knew I was crazy. So a little more than a month after my discharge, while I was at work I grabbed the large bottle of Tylenol kept in the first aid kit and downed the entire thing in between helping customers. I knew that even one Tylenol went through the liver several times, so the amount I forced down my throat would result in liver failure and a painful death. I continued to work through my mounting nausea and went on break with a co-worker a few hours later. We got to talking and again I had second thoughts and I confessed what I had done. She was shocked, but wanted to know what she could do. “Do you want me to call 911 for you?” she asked. After a little convincing, I agreed, and she led me out of our work building (telling our boss that I was very sick and needed to go to the hospital) and across the street to a gas station where she dialed 911. Again paramedics came and got me. Again I went to the ER and was given charcoal, but I couldn’t keep it down and kept vomiting and vomiting every five minutes. The doctor on call drew some blood and my Tylenol level came back triple the maximum level. I was given an IV of the antidote to the Tylenol. My mom and dad came, but eventually my dad went home to get some sleep as I stayed in the ER for hours upon hours, still vomiting. The nurses explained that they weren’t going to supress the vomiting for now so that I could get as much Tylenol out of my system as possible, but they hung some IV fluids so I wouldn’t get dangerously dehydrated. Finally the ER doctor came in and said he was admitting me to the ICU for observation and to get several rounds of the Tylenol antidote. The nurses gave me Zofran to stop the vomiting (a true miracle drug, if you ask me) and sent me upstairs.

I spent two days in the ICU completely off my meds, and I genuinely felt better. I wasn’t allowed out of bed, but my nurses were kind women who popped in every once in a while to say, “You alright? Anything I can get you?” Actually, come to think of it, despite my undeniable medical status as a psych patient, the kindest professionals I met were those not in mental health–police officers, paramedics, ER doctors, and nurses. They, who were supposed to only attend to my physical problems, did a lot more to improve my soul than a lot of so-called “soul healers.”

Anyway, as I was being discharged, my ICU doctor called my psych and wanted to know his input on what to do. Predictably, he said, “Bring her over to us.” By this time my parents (divorcing but still amicable to each other) were sick of me going to this hospital and protested, but they were stuck too. They didn’t have medical authority over me anymore, and I certainly couldn’t refuse (see above with my first “voluntary” admission). So it was back to the regular Adult Unit, where the unit psych lectured me on my suicide attempt: “What you did was a crapshoot. Your liver could have failed,” with a disgusted look on her face. Yup, knew that already. She gave me a brief break from all meds to let my liver recover more, then broached the subject of anti-psychotics. Since I had confessed that the other people in my head had been part of the reason I had tried to kill myself, I should take them. “No,” I said. “Why not?” she said. “Because they are heavy-duty drugs and they cause weight gain and tardive dyskinesia.” Just like with the anti-depressants so many years ago, these concerns were brushed aside and I was given Geodon.

Soon after I started Geodon, I was in my room and I gradually became more and more anxious. About what I couldn’t say, but I just felt so restless I got up and started pacing back and forth in my room. At the same time I had the strangest urge to look up at the ceiling. Over and over this happened. To deal with my intense anxiety, I did what I always had: Found something to cut myself with. I grabbed a fork and did it, then was overcome with guilt and confessed what I had done to a tech that I liked, who sat me down and went to get some ointment and a band-aid. Meanwhile, this maddening thing with my eyes got worse and worse. It got so that they were literally stuck there, looking up at the ceiling. If I focused all of my willpower I could bring them back to looking forward for a few seconds, but they always drifted back up. It was scary and incredibly frustrating. I found that if I held my eyes closed with my hands, it helped some, but the tech sitting with me thought I was trying to push my eyes into my skull (which might have helped by severing some of the malfunctioning muscles and nerves, come to think of it. Kidding!) and made me stop. Sitting for so long with my agitation and frustration led me to get up and start banging my head on the wall, so I was restrained with a bear hug by the tech sitting with me and put in the Quiet Room. For hurting myself I had to be transferred to the Acute Unit, and the saw the psychiatrist again just before going. “Why…am I…doing this?” I asked him about my weird eye tic, suddenly having trouble speaking at a normal rate. What he told me I will never forget, because it was classic psychiatrist bullshit:

“This is your response to stress.” No, it wasn’t. I had never banged my head from frustration before, never felt so restless, never had difficulty speaking, and never had this fucking eye thing!

On the Acute Unit, I sat in front of the nurse’s station and continued with the eye thing. Then yet another thing cropped up: My neck was twisting to the side, farther, farther, farther…I contorted in my chair, crying from the pain. A tech passed by and put some tissues next to me before walking on.

Eventually, these symptoms went away enough that I could sleep that night. But it just got worse over the next few days. I felt so restless I just started pacing up and down the unit hallway, my mind restlessly fixed on touching the door every single time I finished a lap. If I didn’t touch the door, the lap wasn’t finished, and if I didn’t finish a lap…well…something bad would happen. Let’s just keep pacing. My muscles became stiff, so that I kept my arms in a unnatural position in front of my body. Another patient who I had befriended told me, “You look like a robot,” but they looked concerned. Just before my parents came to visit I launched into full-body muscle spasms. The staff hurried me into a small room with my parents while they finally called the doctor. I lay on an exam table at the mercy of my chemically malfunctioning brain sending out random continuous signals to my muscles. My back and neck twisted, my toes pointed, my fingers curled and stretched until I thought my joints would dislocate from the pressure. My parents were horrified and tried to comfort me by massaging the rigid areas and holding me. A nurse came in with yet another pill: Inderal, a beta-blocker to relax my muscles. This actually worked, and I was again able to get some sleep.

The doctor got the hint that Geodon was not a good idea, and I got off of that, replaced with Seroquel. He prescribed low doses of Inderal also to combat possible muscle issues I might have with this med. Yet another day on the Acute Unit I sat staring off into space, my mind still racing with anxious thoughts. I got up and banged my head against the wall, prompting two nurses to grab me firmly by the arms and offer me a pill, probably another anti-psychotic. I shook my head; I did not want to take any more of that shit. They half-dragged me to the Quiet Room because I wouldn’t take the meds. I paced in the room, anxiously trying to find a way to hurt myself to relieve this feeling of anxiety. I banged my head against the little window. Security was called. The psychiatrist poked his head in and said, “What’s going on here?” I hissed at him, “Go away!” He was the last person I wanted to see. He went away, but now security was there: Two large men. I became afraid and cowered in a corner. This is the last thing I remember; I have a tendency to black out just before something traumatic happens and wake up in time to experience (and thus remember) the actual traumatic event. I woke up on the mattress in the middle of the room, held down by four staff members (including the men from security). It was at that point I lost all connection with reality. I think them holding me down like that brought on an intense flashback, but usually when I have a flashback no one is touching me and I am otherwise safe. Thus, my brain, already confused by the flashback, interpreted their touch as them being about to rape me. I completely forgot who they were, where I was, who I was. I was utterly consumed by primal fear. Thus when they pulled down my pants and stuck the syringe of Haldol into my thigh, I thought this was the moment of penetration and a horrible, ripping scream tore out of me.

They got the Haldol in me and finally let me alone. I can’t remember if they pulled my pants up again or not. The last thing I saw was a nurse watching me with her arms crossed before I went under.

When I was discharged from the hospital again, my new diagnosis was Borderline Personality Disorder and I was sent home with four meds taken three times a day to combat my new Borderline-ness: Cymbalta, Tegretol, Seroquel, and Inderal. It was as if the psychiatrists were saying, “Welcome to the big leagues, kid. Now you’re clearly in it for life, so here’s your new merit badge: Poly-pharmacy.” My mom was concerned about how many meds I was on, and asked a colleague at her work who had worked in mental health. He told her that for somebody with two suicide attempts in a month, that was the norm. So like any good nurse, my mother dispensed the drugs to me.

I didn’t feel better. I’d had to quit my job, so now I just sat at home, getting fat from the meds and being miserable. I gained 40 pounds. Stretch marks streaked my thighs. This was the last straw. I decided to get off of the meds. All of them. At first my mother fought me. You need these meds, honey, you’re sick. No, these meds are making me sick, I countered.

So over a few months, I got off of them. I saw Dr. S., who gave me EMDR to deal with my trauma. Without meds, I didn’t have intense suicidal thoughts! I didn’t self-harm! I lost the weight! I could actually be anxious, get over it, and move on! With the therapy, I managed to bring my PTSD symptoms down to almost nothing. I sleep peacefully and have no flashbacks. I integrated Black and White back into my core self. As for the other people in my head, well, without all of my negative issues, they are happier too. We cooperate and now we are even friends. Only one of my many “diagnoses” do I agree with my doctors on: I am definitely high-functioning autistic, and proud of it.

 So there it is. My whole, entire story. Writing it out is hard. I can’t believe I actually lived all of it, especially since I cut some things out for length in the writing. I’m sorry it’s so long. But it did help to get it here, to see the pattern that I’ve read about in so many articles and your blog.

 P.S.–My brother is now on no meds and doing well. He lost the weight, calmed down, and married the girl of his dreams. He now serves in the military, and we get along well. I have forgiven him for what he did.

My conversation with a “Research Scientist” continues 04/05/2011

Posted by ALT in "An Insider's Perspective", Mental Health Research.
Tags: , , ,
3 comments

If we knew what we were doing, it wouldn’t be called Research.

(Albert Einstein)

this quote being the only decoration which hangs in the office of my boss, the Research Scientist

I remember the day I first crossed the threshold of his office – for my job interview.  That quote, framed and prominently displayed in an otherwise bare office, gave me pause.  “Is that supposed to be cute?” I thought. 

I wondered if Albert Einstein ever even said that.  And if he did, does it somehow make more sense — and sound more like something a believer in research/science would say — in German?  Or in context?

What kind of a researcher would make this his motto, even as a joke? 

But then I turned my attention to the man in front of me.  Destitute and desperate for a job at the time, I did my best to put these questions aside and form a good opinion of the Research Scientist who had the power to radically change my position and my general outlook. 

I really wanted that job.

2 years later, after gaining a sickening familiarity with his research “methods,” I’ve got a much better handle on what that quote means to him.  I think he takes a great deal of comfort in it.  If Albert Einstein, the standard cultural trope for “genius” and “scientist,” thought this – then maybe he cut corners, only examined data that was convenient (writing off the rest as “faulty” or whatever), and just plain made shit up sometimes, too!   By pulling Einstein down to a comfortable level of mediocrity, this Research Scientist is suddenly in much better company.  It’s not quite “I’m just as good as Einstein!” – it’s more like “Einstein was just as bad as I am!”

What a dumbass.

   

PART II to our conversation

Our second conversation on the childhood bipolar “fact” sheet took place on Friday.  And I spent the weekend pondering.  You see, I realized that he probably never read the sheet all the way through.  I inferred this from his lack of knowledge of what it said beyond the first two paragraphs – which I had read to him over the phone — and his mistaken attribution of the sheet to NAMI. 

He didn’t read it to protect his carefully maintained ignorance/innocence.  Basically, if he didn’t know what it said, he wouldn’t be convinced that ethically, morally, something needed to be done.  And he would therefore maintain his innocence.  [I told you I’m familiar with his methods!] 

What to do?  How to provoke some actual critical thinking about this?  He likes to think with his self-preservation gut (prime directive: preserve ignorance/innocence).  How to get beyond those very formidable defenses against data and reach the actual Research Scientist with conscience? 

I thought I’d give it one more shot.

This time, I went with email.  It would appear less confrontational, and maybe not trigger those strong defensive responses.

***

From: ALT
Sent: Monday, April 04, 2011 8:19 AM
To: Research Scientist
Attachments: bipolar info sheet.pdf

Research Scientist,

See attached to learn my objections to the childhood bipolar info sheet. I welcome your comments or questions. I hope you will give this information all the attention an “issue close to your heart” deserves.

I think your use on Friday of the phrase “company line” was very appropriate. These inaccuracies certainly promote a company line – lifelong, chronic illness never to be cured but only to be suppressed with an ever‐changing cocktail of expensive, patented drugs. It is a very convenient narrative for a pharmaceutical company.

But we are not a company. We are “researchers,” are we not?

Sincerely yours,

ALT

***

His response (in about a minute!):

You cannot understand how close this issue is to me. SO forgive me if I do not meet your expectations related to this.

***

That’s it. 

What I’d like to say to this Research Scientist (if the conversation weren’t so clearly over) is that it’s not about “my expectations.”  It’s not about me at all.  It’s about doing what’s right for the families and youth who will be affected by this information.

 

March on, Soldier.  But what are you fighting for?

Did you know that in police or heavily militarized states (Mexico, as one of many examples), where soldiers and policeman treat much of the country as an occupied territory, the citizens and populace as enemies – a policeman or soldier is never stationed in his hometown, or even home region?  They are stationed as far away from home as possible.

Why?

Because there are some things people typically just won’t do to their brothers, relatives, childhood companions.   Point a gun in their faces.  Dehumanize them.  Treat them as fundamentally “other.”  Kill, rape, terrorize.

But strangers?  Folks that look different?  And in the case of Mexico, speak different languages?  Come from radically different cultural heritages? 

Yeah.  You can train soldiers to do it to them.  Incrementally, step-by-step.  It can be done. 

I shared this information, long ago, with my boss the Research Scientist.  And then I mentioned the fact that nearly all of his research projects take place far from where he lives.  One is a 3 hours’ drive away; another is 18 hours. He’s often told me that observation troubles him. 

Why is it so easy to think of him as a mercenary? 

When it comes to childhood bipolar disorder, whose “company line” is he soldiering, guarding with his silence?  He styles himself as a children’s mental health advocate, but what is he really fighting for?

LOVE FOR SALE: the trouble with professional caregivers 04/04/2011

Posted by ALT in Mental Health News.
Tags: , , , ,
6 comments

Remember Dr. Levin?  He was the psychiatrist featured in the New York Times a few weeks back as a case study in the new, industrialized form of psychiatric care that is increasingly becoming the norm: he describes himself as similar to “a good Volkswagen mechanic” and offers his many clients 15 minute in-and-out appointments, which start off with a symptoms checklist, move on abruptly to diagnosis, and finish with prescription(s) for psychotropics.  There simply isn’t time for exchanging pleasantries – like the patient’s actual name – or for suggesting alternatives to medication like talk therapy or mind-body healing practices. 

LOOK OUT: Dr. Levin isn’t a scary singularity, and neither is psychiatry as a field. 

The article describing him was part of a series (Doctors INC), in which the NYT is documenting a similar shift that is happening across all fields of Western medicine.  A shift from individualized, long term care of a small number of patients (50-60) taking place in modest clinical practices (maybe even home-based!) to industrialized, “efficient,” high volume traffic of literally thousands of patients taking place in hospitals.

In the series’ most recent article, “More Physicians Say No to Endless Workdays,” we see this theme as it plays out in a single family composed of three generations of doctors.  Grandpa had a private, mostly home-based practice (Grandma used to boil urine samples on the stove!).

"Grandma, why does dinner smell like Kevin's diaper?"

  

Father had a private practice but spent most of his hours at the office and was always on call; and finally Daughter, Dr. Kate Dewar, is working in a hospital emergency room, a salaried doctor for a private corporation.

She cites several reasons for the shift – in her current position she is never on call, she has the opportunity to perform more “interesting procedures… collect[ing] rare and difficult interventions like merit badges,” and she can “fix stuff and move on,” not having to worry about pesky follow-up or long term care. 

But Ms. Dewar’s primary motivating factor was the birth of her twins in February.  As a salaried ER doctor working for a corporation, she can work fewer hours, spending more time with her children. 

Understandable.  And admirable!

But wait…

“Look, I’m as committed to being a doctor as anyone. I went back to work six weeks after my boys were born. I love my job,” said Dr. Kate Dewar. “But I was in tears walking out of the house that first day. I’m the mother of twins, and I want to be there to feed them, play games with them or open presents with them on Christmas morning. Or at least I want the option to do those things without fearing I’ll be called back to the hospital.”

The pain of that first week’s separation was lessened somewhat because she worked in the hospital’s new pediatric emergency department. “I felt better knowing that at least I was taking care of somebody else’s babies even if I couldn’t be with mine,” she said.

(from the NYT article “More Physicians Say No to Endless Workdays;” emphasis added)

I thought she wanted to spend more time with her kids?  At 6 weeks old, her babies are still well inside the gestation period, three pre-natal trimesters plus the post-natal “fourth trimester.”  Put simply, though they’re not physically connected by umbilical cord anymore, they still make up a mother-baby dyad.  Those babies need mama.  24/7.  And mama needs them, too.  It’s biological, instinctual. 

  

The Vicious Cycle

So this is how the vicious social services cycle begins.  Instead of directing her instinctive surge of mothering energy towards her own children, Dr. Dewar directs it – for profit – towards the children of strangers [probably using some of the profits to hire a professional caregiver to direct inferior mothering energy at her own children]. Finding themselves out-of-place and re-placed in the professional setting, the mothers of Dr. Dewar’s surrogate, hospitalized children will then be forced to redirect their own energies, starting a double-edged chain reaction: all of the mothers continuously frustrated by failed attempts to mother other things (not the children they were designed to care for) and none of the children benefiting from the highly personalized and unconditional-love-charged energy of their own mothers.

When professionals take the place of parents, everyone suffers – biological parents, children; the surrogate (professional) parents, their charges, and their true (biological) children.   No one is completely free to give the gift nature designed us all to give [unconditional love!]; no one fully experiences the benefits of such an amazing gift successfully given/received.  Will the defecit created in all of these [physically, emotionally, spiritually] frustrated  folks pave the way for more social “services” later in life?  It’s a strong possiblity. 

No matter how well paid, professionals simply can’t love children like biological parents can.  And love is what a baby needs, above all else — even the most critical condition, premature baby.  Skin-to-skin contact.  The reassuring voices of people baby knows well (though she has only recently been able to see them, she’s been hearing their every word for the past nine months!). 

Love.  Free.  Unconditional.  Forever.

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