Patient Advocates, or Unwitting Drug Company Shills?

In my post of May 3, Preying on Human Misery, I discussed how big Pharma took advantage of the parental desperation that I described again in the recent (February 26) post, Couch Potatoes Unleashed.  Many of today's parents absolutely panic whenever their kids start acting out or having even the most inconsequential of emotional problems.  They at first obsess about whether or not they might have done something terribly wrong to cause it, but soon begin to look for something else to blame - anything else - that might account for the problem that does not involve family relationships.

Thinking their children's problems might be due to family discord tends to make them feel even guiltier and even more panicky. Often they do not realize that it is their own guilty and panicky behavior which feeds into their kid's problems and makes those problems far worse then they might be otherwise.  And thus, a vicious circle is created.  More parental guilt and anxiety leads to more acting out and more emotional distress in the child, which leads to more parental guilt and anxiety, and so forth.

A few years ago, Big Pharma took one look at the Child and Adolescent Bipolar Foundation (CABF) and decided that here was a great population to exploit in their continued efforts to expand the definition of bipolar disorder in order to sell more atypical antipsychotics to unsuspecting patients (See my post of March 22, The Zyprexa Documents).

They helped fund the CABF and used their paid-off "experts" like Joseph Biederman, as well as their sophisticated psychological marketing techniques, to spread the word that  a brain disease was the source of these children's problems, and that their medications were the solution.  Soon, entire families began to label their members with various and sundry psychiatric disorders, a few of which were completely bogus, and others of which they simply did not have.

To their credit, CABF eventually stopped accepting drug company money.  But by then the damage had already been done.

Big PhARMA's strategy of using advocacy groups to increase sales was by no means limited to CABF, and by no means limited to psychiatry.  This marketing strategy is ingenious, hard to catch, very sneaky, and very effective. According to a new study in the American Journal of Public Health, not-for-profit patient health advocacy groups like the American Diabetes Association also get money from drug companies in the form of grants that—more often than not—are not disclosed to the public by those groups. 

These grants are not made because the drug companies have the best interests of the common man at heart.  What they want is for the patient groups to help push their drugs and medical devices.  It works.

The National Alliance on Mentally Illness (NAMI) has been a major target for Big Pharma.  This group was already on the warpath against psychotherapists - particularly family therapists and psychoanalysts - for unfairly blaming major mental illnesses like schizophrenia and autism on poor parenting.  Many members were all too anxious to absolve dysfunctional family interactions of having any role at all in any psychiatric disorder or behavior problem at all for the reasons discussed above, and so became easy targets for the pharmaceutical industry.



Like the famed Pied Piper, the industry played a tune that members of the advocacy group were delighted to hear - that they had absolutely no control over the way their children acted or turned out, and that the proper medication would solve all of their problems.
 
The website ProPublica reports: 

"From 2006 to 2008, the group took in nearly $23 million in drug company donations—about three-quarters of its fund-raising. At the time, NAMI’s executive director told The New York Times that “the percentage of money from pharma has been higher than we have wanted it to be” and promised greater disclosures.

In the area of neurosciences, [drug company Eli] Lilly gave NAMI $450,000 for its Campaign for the Mind of America. NAMI has advocated that cost should not be a consideration when prescribing for patients. 'For the most severely disabled,' insisted NAMI, ‘effective treatment often means access to the newest medications such as atypical anti- psychotic and anti-depressive agents. . . . Doctors must be allowed to utilize the latest breakthrough in medical science . . . without bureaucratic restrictions to the access for life-saving medications.’ To the degree that NAMI’s campaign succeeded, the market for Lilly’s neuroscience drugs expanded."

PhARMA marketing departments often seem to know more psychology than many mental health providers.

Teacher, Teacher, I Declare...

After I posted Preying on Human Misery on May 3, which was critical of the way the Child and Adolescent Bipolar Foundation often  unwittingly supports the labeling of acting-out kids as having brain disorders, one of the people associated with the organization wrote me an angry e-mail.  It took note of the question I had posed, "Why would any parent want their child to be labeled with a brian disorder?"   I was told in no uncertain terms that no parent would ever want this, just as no parent wants their child to be labeled with a life threatening illness. 

In my e-mail reply, I said: "Of course many parents resist the drugs, thank goodness, but other parents we see everyday in our clinics demand both the diagnosis of bipolar disorder and the drugs, and when told their children do not need drugs, they go elsewhere.  Are you aware of this?  It’s also happening all over the country.  Your statement that there are no parents who want their children to be diagnosed with a brain disorder is demonstrably incorrect.  And I am not even including the parents who coach their children to act certain ways in order to get what are known as 'crazy checks' from the government." 

Parents who insist that their children are diseased in this manner, often with the backing of a mental health professional, tend to want to blame all of their family's problems on everything and anything but themselves. 

We are seeing another example in schools, in which today's parents may blame "bad teachers" for all of the academic and disciplinary failings of their children.  Stories abound about how teachers, when they send home notes describing problematic behavior in one of their students, are met with irate parents who defend their child, verbally attack the teacher, and are willing to complain about the teacher's "outrageous prejudice" against their darling child to the school principal or even to the district superintendent.  Several commentators have pointed out that, in the good old days, such a child would be punished at school and then later again at home.  The parents believed the teacher's side of the story, and never became so damn defensive.

Frighteningly,  the theme of never holding parents to account for their children's behavior has been picked up by politicians of both political parties, as they attempt to "fix" our "broken down" educational system.  In the case of politicians, however, there may be a second motive behind just catering to the prejudices of the electorate.  One must wonder if the "blame the teacher" movement is designed to destroy public schools.  This issue was covered nicely in a recent op-ed column by Bill Maxwell (http://scrippsnews.com/content/maxwell-dont-turn-teachers-scapegoats):

"No Child Left Behind, for all intents and purposes, is a blueprint for blaming teachers and making the privatization of our public schools more palatable by offering charter schools as the panacea.  Now President Barack Obama has succumbed to the Blame the Teacher Syndrome with his Race to the Top program. A mainstay of the program is improving public education by rewarding or punishing teachers when their schools do or do not close the so-called achievement gap...'Whenever data is generated by any credible source, the correlation between poverty and educational achievement is so strong it is impossible for any unbiased individual to ignore,' writes Jack Random of dissidentvoice.org, an online newsletter. 'When schools are ranked according to quality, those on the top of the list are invariably wealthy and predominantly white while those at the bottom are invariably poor with high proportions of minorities.'"

The politicians' idea is that teachers might actually lose their jobs if their classes' performance on standardized tests does not improve - as if teachers are magically in control of just how motivated to learn the students assigned to them are.  Aside from the lack of wisdom of using standardized tests (which lead to "teaching to the test," a lack of emphasis on teaching critical thinking skills, as well as outright cheating in order to compete), this idea clearly turns teachers into scapegoats.   While there are no doubt incompetent teachers, I highly doubt that they are concentrated in the poorest performing schools.  For that to be true, it would have to have been planned that way. 

Well, come to think of it, maybe it has been planned that way to some degree. The most inexperienced teachers are often sent to work in the most difficult districts, especially in an economic environment in which thousands of teachers have been laid off nationwide - usually with the most senior teachers having, well, seniority. The experienced teachers not only get to keep their jobs, they often have had a chance to land the best school assignments. 

When you combine that process with the way schools are funded using local property taxes, so the schools in the poorest districts have often had the fewest resources, you can see why some minorities get paranoid that the government is conspiring to "keep them in their place."

I propose that we test the proposition that teachers are to blame for the poor performance of their students on standardized tests.  After one year, we should have the schools with the lowest and highest test averages trade faculties.  That way, after a second year, we can see if the supposedly "better" teachers did much better with what are probably the most difficult students, and if the test scores of the students of the supposedly "bad" teachers declined significantly.  Anyone wanna bet on the outcome?

Freddy the Freeloader and Minnie the Moocher Part II: the Hidden Agendas

In my post of August 10, I wrote about how I have been seeing more and more twenty-somethings (and, I might add, thirty- and sometimes forty-somethings) who are freeloading off of their parents with their parents' almost compulsive cooperation.  The parents may complain a lot, but cooperate they do.  The parents' enabling behavior, as time goes on, produces and then reinforces the "incompetent" behavior of the future Freddy the Freeloaders and Minnie the Moochers.  If the parents compulsively do everything for their "kids" and expect nothing from them, their kids get the idea that providing for children is an extremely vital activity for their parents, and continue to offer up themselves so that the parents can continue with the role they seem to want to play so desperately.

But what's going on with the parents?  Often you can show these parents reams of expert opinion from all kinds of opposing camps that all almost unanimously say something to the effect that, "If you don't let kids do for themselves, they never learn how."  If you quote these experts, said parents will, more often than not, get extremely defensive.  All the while, they will completely ignore the "evidence."  The fact that the expert opinion is in a sense proved to them every day that their children act helplessly seems to go in one head and out the other. 

The parents may rush their kid to some horrid psychiatrist who will assert that the kids' failures are really due to some sort of brain pathology, and immediately put the offspring on medication that obviously does not change the kids' overall behavior one bit.  Nonetheless,the parents will then hurry off to join the Child and Adolescent Bipolar Foundation instead of looking at their own seemingly counter-productive behavior, in order to have their bizarre views reinforced by like-minded parents.

Actually, in a way I disagree with the experts who believe that offspring growing up in this environment "never learn" to take care of themselves.  What dysfunctional individuals are and are not able to do, and what knowledge they do or do not possess, is not something they are necessarily going to admit to for fear of not being able to continue in their role of "losers who are totally dependent on their parents."  Quite often they are secretly very capable individuals indeed.  How do I know this if they will not demonstrate competence nor admit to any if they have it?  Simple.  If they learn to trust a therapist, and if the therapist knows how to ask the right questions, they will then admit to said competence and then demonstrate it in order to remove all doubt.

So again, what's going on with the parents?  I find that there are several possibilities, but the most common are three in number. 

The first is sort of a pathological empty nest syndrome.  These parents are so wrapped up in taking care of children that they would literally have an existential crisis if the kids left, and not know what to do with themselves any more.  They might become extremely depressed.  If they are covertly conflicted over the very role of being a parent and feel guilty about those feelings, they may also have a compulsive need to parent and yet constantly be angry with their children for continuing to be around.  This is the situation that is most frequently seen in offspring who develop borderline personality disorder (BPD).   "Don't leave me - I hate you." 

Sometimes the offspring who develops BPD has a child out of wedlock and then acts too incompetent to take care of the child. The child then must be raised by its grandparents.  The child becomes a sort of gift to the parents.  This is one of the major reasons for the huge spike in the number of grandparents raising grandchildren in the US seen over the last couple of decades.  But that's a matter for another post.

The second family dynamic in which a Freddie or a Minnie results is when the child is triangulated into the parents' relationship.  They parents do not get along with each other but remain so focussed on the alledged inadequancies of their hapless offspring that there is almost no time left for them to get on each others' nerves.  If the child "grows up" and moves away, they then start fighting with each other more and more. 

In a milder version of this dynamic, an adult child moves nearby and is "on call" for the parents to mediate disputes.  Usually it's a daughter but not always.  Mom will come over and say things like, "Your father won't do [such and such] for me. But he'll do it if you ask!"

Said daughter will often not marry because when she asks Mom why she does not ask for help from the daughter's brother or sister, Mom says, "Well, she has a family and I don't want to bother her."  In other words, "She has a family and you don't."  Since Mom seems to need someone to do this, daughter takes Mom's statement as an instruction for her to remain single. Otherwise Mom is in trouble.  The daughter will accomplish this feat in a number of ways.  She might choose to stay celibate, but if this is unsatisfactory, she may instead date - but nothing but a series of commitment-phobic or married men.  At least then she gets to have sex and companionship.  Silver lining.

The third common family dynamic is the most interesting.  To the outside world as well as to the family, the parents appear to be taking care of their incompetent child, but underneath the surface, the child is actually taking care of the parents’ emotional or physical needs. I refer to this shell game as Who is Taking Care of Whom? because the answer depends on the answer to another question: exactly which needs are we talking about here?

In my new book, How Dysfunctional Families Spur Mental Disorders, I describe an interesting example of this.  It is the story of a man in his late thirties who still lived with his parents. He would rarely keep a job for long, often stole money from them, and ran up significant bills on their credit card without permission.

Oddly, the parents always left money lying around the house in plain view, and never once called the credit card company to make sure he could not use the card any longer. They never once suggested that he move out. In fact, whenever he offered to, they would tell him that he was too incompetent to make it on his own. Of course, they certainly had reason to believe that such was the case, but from the patient’s point of view, they did this because they secretly wanted him to stay there and continue his seemingly outrageous behavior.

During his therapy, the other side of the Who is Taking Care of Whom shell game gradually emerged. As they used to say on the great TV show Pushing Daisies, the facts were these: the parents were elderly and lived in an extremely crime-ridden and dangerous neighborhood. Several other elderly residents had been burglarized and in some cases assaulted and almost killed. Almost all of the original inhabitants of the block on which they lived had moved out because of the escalating crime rate, but the patient’s parents refused to budge. Furthermore, they were developing physical infirmities which made them easy targets, and would act in careless ways that almost invited victimization.

The patient originally presented to me as a very angry and potentially explosive individual. Many of my office staff was fearful of him. In his neighborhood, he acted like a dangerous and possibly crazy fellow in many different and very public ways that communicated a strong message that he might go postal at a moment’s notice. His behavior said, “Do not mess with me.” In all probability, because of this behavior, his parents and their house were never touched by crime. Despite his angry appearance, he was in fact a highly fearful and non-violent person. His false self had the effect of protecting his parents from crime while at the same time making it appear to everyone else that he was abusing them and seemed to most others to be completely dependent on them. His apparent “abuse” of his parents took place with their full cooperation.

Babies and Bathwater - I Must Be Doing Something Right.

Note: this will be the last post for the next couple of weeks, but I will be back, so don't go away.

Where is Goldilocks when we need her? I am always amazed at how people, even professionals who should know better, can take extreme positions and then argue vehemently for them (usually with a healthy dose of debate tricks and logical fallacies). Middle ground does not seem to exist for them. I must be doing something right, because I am now catching flack from both sides.

When I began writing this blog, I expected to be attacked by those folks who think that child abuse and dysfunctional family interactions are a figment of the imagination of a bunch of whining liars, and that the problem with modern psychiatry is that we are just not prescribing near enough drugs. I was waiting with baited breath to hear the phrase, "Parent Bashing." It actually took a while for me to hear from these folks, but it finally happened. Susan Resko, Executive Director of the Child & Adolescent Bipolar Foundation, naturally took exception to my post of May 3, 2010, Preying on Human Misery, which was highly critical of the way her organization's web site was being used and abused by the pharmaceutical companies. She accused me of posting misinformation, which I had in fact taken from other websites that I find to be reliable. In response to an e-mail, I asked her to let me know which things I had wrong, and told her that she could post an unedited rebuttal on my blog, to which I would of course respond. In a blistering e-mail back, she declined my offer.

I am also getting a few negative e-mails from folks at the other extreme: those people who believe that all mental illness is a myth and a hoax, and that any doctor who prescribes psychiatric medications for any reason is destroying the lives of their patients. And these people are not even Scientologists (whom I think have not yet come across my blog). This point of view is equally absurd in my opinion.

I have even been accused of trying to hawk my upcoming book. Ya think? Why shouldn't I? It's very informative and I think people will find it entertaining. However, just for the record, I am in fact not promoting my book, which is called HOW DYSFUNCTIONAL FAMILIES SPUR MENTAL DISORDERS: A BALANCED APPROACH TO RESOLVE PROBLEMS AND RECONCILE RELATIONSHIPS, which should be available this summer from either Praeger Publishers or one of their imprints. Again, to be very clear, the book that I am NOT promoting is called HOW DYSFUNCTIONAL FAMILIES SPUR MENTAL DISORDERS. Available soon!

Preying on Human Misery

Last year at the annual meeting of the American Psychiatric Association, I went to see a panel on the mis- and over-diagnosis of pediatric bipolar disorder. The idea that a brief period of agitation is somehow a manic episode has been advanced by several prominent “researchers” being paid by drug companies It is in direct contradiction to the official DSM criteria that mandate that bipolar mania last a minimum of seven straight days with no letup, and that hypomania last a minimum of four straight days. While these duration criteria are obviously somewhat arbitrary, they were put into the DSM precisely so reactive behavior would not be misdiagnosed as bipolar disorder.

I met another psychiatrist in the audience who told me about the existence of a website, bpkids.org, which is the homepage of an organization called the Child and Adolescent Bipolar Foundation (CABF). He said the organization was primarily funded by the drug companies, and featured messageboards with advice from parents of allegedly bipolar children on what other parents should tell and not tell their doctors in order to get their child labeled with the disorder. The drug companies also used the website to recruit subjects for ongoing clinical trials of drugs for pediatric bipolar disorder, thereby assuring that the subjects in their clinical trials were only those whose parents were anxious to have their child so labeled.

Why would any parent want their child to be labeled with a brain disorder? I go into detail about the answer to this question in my upcoming book, but suffice it to say here that many parents these days suffer from an all-consuming fear that, because they have careers and other responsibilities, they are somehow short-changing their children. The guilt caused by this fear is enormous and leads to difficulties in their practicing two of three main “L’s” of child rearing: Limit setting, and Let-‘em-go. (The third L is love, which is usually not a problem for most parents attracted to parent support groups. Severely abusive or neglectful parents, while also secretly consumed with guilt, will generally avoid them. They are deathly afraid that their mistreatment of their children will be discovered by the authorities). Having the child labelled as sick instead of poorly disciplined helps some parents feel less guilty about their own behavior.

I checked out the Bpkids website and it was pretty much just as the psychiatrist who told me about it described. It did indeed contain a listing of clinical trials.

According to a post on the Furious Seasons Website on June 10, 2008, one of CABF's major funders was Janssen, which makes Risperdal, an atypical antipsychotic that was approved the previous year for use in kids 10 and above with bipolar disorder. The post also said that Joseph Biederman, the Harvard Guru of Drugging Children, sat at the head of CABF's Advisory Council.

[CORRECTION: Since I originally posted this, I have learned that the Furious Seasons post quoted above was incorrect about Dr. Biederman. Although he is on CABF's scientific advisory council, he is not now nor has he ever been the head of the council]

However, I went back to the website just recently and found that it had changed considerably. It now stated prominently that it did not accept any drug company funding at all. Furthermore, the list of clinical trials had disappeared. There was even a blog with some posts friendly to family therapy.

What happened? The only clue I could find quickly was an article in New Scientist magazine from 2006. It said:

“Meanwhile, concerns about the safety of psychiatric drugs in children, which reached new heights in 2004, have hit the Child and Adolescent Bipolar Foundation hard. Its donations from industry fell from about 40 per cent of its total revenue in 2004 to 20 per cent in 2006. ‘Pharmaceutical companies are not as willing to support us because of increased scrutiny around psychiatric treatments in children,’ says Susan Resko, the foundation's executive director. As a consequence, she has had to lay off more than half of her staff.”

My guess is that as the parent support group became more and more suspicious of the side effects as well as the efficacy of the drugs being given to their children, the pharmaceutical companies pulled out completely. The New Scientist article went on to say that another patient support group, the Depression and Bipolar Support Alliance, received more than half of its 2005 funding from industry.

It added, “The treatment section of the Depression and Bipolar Support Alliance's site was developed with an "educational grant" from Neuronetics, a company which gave at least $10,000 and possibly as much as $150,000 to the alliance in 2005. One page describes transcranial magnetic stimulation (TMS) and vagus nerve stimulation (VNS) which both aim to treat mood disorders by stimulating neural activity. Neuronetics makes equipment for TMS, which has not yet been approved as a treatment. Nevertheless, the site provides web links and telephone numbers for Neuronetics and Cyberonics, a VNS equipment maker that donated between $150,000 and $500,000 to the alliance in 2005.”

I checked out that organization’s website, and voila, there it was! The list of clinical trials. You can find them at http://www.dbsalliance.org/site/PageServer?pagename=research_trials_bipolarlist. According to a variety of sources including Senator Grassley of Iowa and the New York Times (“Drug Makers Are Advocacy Group’s Biggest Donors” By Gardiner Harris, published: October 21, 2009), involvement by the pharmaceutical companies with patient support groups is rampant - as long as the companies are hawking a drug that might treat the disorder in question. For disorders that are best treated without drugs, their involvement is nil.

That the Bpkids website unwittingly allowed demagogues like Biederman and the pharmaceutical companies to prey on desperate but well-meaning parents of out-of-control kids is best appreciated by looking at some of the current postings on the website’s blog. The posts are heartbreaking. The posters all seem to accept the bipolar diagnosis of their child without much question, even as they speak of the beneficial effects of learning how to better interact with their child. When patients are truly manic, they remain that way no matter what anyone else does.

While I obviously cannot make a diagnosis of any particular child based on a brief blog description, in aggregate the behavior that many of the parents describe in their children strongly suggests acting-out, manipulation, and something called spoiling behavior. Spoiling behavior is one of the hallmarks of patients with borderline personality disorder, although it is not one of the DSM criteria. (I will not further define it in this post, as it would take too long. I discuss it and the reasons for it at length in my last book for therapists, Psychotherapy with Borderline Patients: An Integrated Approach).

The posters’ descriptions are consistent with the experience of other psychiatrists all over the country who believe the way I do. One psychiatrist posted this on Medscape:

“The problem is that for many of us, what is being medicated and passed off as bipolar doesn't even come close. My favorite question I ask parents of kids referred who have previously been diagnosed bipolar and on several meds is something like: Could you tell me about his moods, how long they last and is there any predictability to them? About 80% of the time a get a response along the lines of, ‘Oh no, he just blows up whenever he doesn't get his way.’ I can attest to the fact that a large number of shrinks are calling that bipolar. While meds will often tone this down, that doesn't make it bipolar. Kids like this primarily need limits which have been lacking for years and which parents would rather have treated with meds than go through the pain of applying limits and structure.”

Furthermore, the descriptions of some of the parents’ own behavior as posted on the Bpkids blog hint at problematic parental over-involvement.

For example, one mother relayed that, when her teen was put in a residential treatment program, the daughter accused the parents of abandoning her. This accusation caused the mother to “burst into sobs.” She also mentioned that her daughter was able to behave perfectly normally when the police arrived after she called them on her.

Another mother stated that her child had been given multiple diagnoses from different psychiatrists including oppositional defiant disorder, Asperger’s syndrome, ADHD, generalized mood disorder, and some mysterious illness called sensory integration dysfunction before being diagnosed as bipolar. (This plethora of different diagnoses is a sure sign that a careful psychiatric evaluation has never been done). The child would get angry when told to do his homework or when reminded that it was his week to do the dishes. Sorry, but children who throw tantrums when they do not get their way ain’t manic.