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.

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.