Patient Advocacy, Drug Companies, and Family Therapy

Patient advocacy groups have changed in recent years with problematic results.

Posted Mar 02, 2020

 DSCN0086 Dysfunctional Tree Family by Peter Beardsley, C.C. by 2.0
Source: Flickr: DSCN0086 Dysfunctional Tree Family by Peter Beardsley, C.C. by 2.0

Back at the beginning of June 2019, I received an e-mail from a manager in marketing and communications in the National Alliance for the Mentally Ill (NAMI) inviting me to write a blog post for them as they were planning on featuring articles in an upcoming issue about personality disorders. I replied that I would be happy to do so. However, I wrote back that, because I discuss the relationship between family dynamics and personality disorders, what I write might be offensive to some of NAMI readers. The manager then suggested that I avoid this and write about what it means to have a personality disorder and how they are diagnosed. 

I agreed to do it but had a strong suspicion that they would not like what I would write even if I mostly avoided the family dynamics issues (although I did briefly allude to the role of child abuse). I believe that personality disorders are different from other diagnoses in the DSM diagnostic manual and that the now-eliminated separate classification (Axis II) should have been retained. A copy of the blog post I sent to them will be published shortly in a separate post.

I was right. Soon after I turned in the post, I received an e-mail from higher up on the NAMI food chain, the Director of Marketing Communications, who wrote: “…It appears there may be a misunderstanding about the agreed-upon blog topic about what it means to have a personality disorder and how they are diagnosed. There are elements in your submission that do not align with NAMI’s position and educational materials about personality disorders. We align with the DSM-5 categorization of personality disorders as mental illness.”

I wrote back thanking them for the opportunity to contribute to their blog but basically said that I was not going to write a post as if the definition of "mental illnesses" in the DSM diagnosis list is not broad and that it obviously covers some behavioral syndromes that are not brain diseases. In point of fact, the diagnoses are called mental disorders, not mental illnesses. To go along with the idea that all psych disorders are alike in this sense would be lying. Furthermore, by design, the DSM says nothing about the causes of psychiatric disorders.

Why did I know this would happen?

NAMI started out as an advocate for the severely and chronically mentally ill, mostly people with schizophrenia. In the past, they had done great work in this regard. I know that the group's members were rightfully furious with both psychoanalysts and especially family systems therapists for blaming what is essentially a biological brain disease on family dysfunction. Of course, a stressful family environment can make the presentation of any psychiatric or physical illness worse, but schizophrenia is definitely not caused by family double-binds or “schizophrenogenic” mothers.

Unfortunately, the NAMI membership now includes people who dislike anyone who would dare suggest that any diagnosis in the DSM just might be created by severe family dysfunction. This position is, in general,  attractive to guilty parents who do not want to look at their own family dysfunction, and who therefore put a lot of store in questionable “biological” psych disorders like pediatric bipolar disorder and adult ADHD. They joined the parents of people with actual brain disorders in the advocacy group.

In the post I submitted, I purposely did not mention family dysfunction in making the case that personality disorders (not including so-called Cluster A, which in my opinion are pre-psychotic conditions) were behavioral syndromes and not brain diseases. Still, some people might suspect that that was the implication of the piece.

There is also a second thing going on at NAMI. There was been a major change in how NAMI derived the bulk of its funding. In October of 2009, the New York Times reported that Senator Charles Grassley had been looking into how patient advocacy groups like NAMI were getting a good portion of their funding from drug companies. He found that drug makers from 2006 to 2008 contributed nearly $23 million to the alliance, about 75 percent of its donations. NAMI has long been criticized for coordinating some of its lobbying efforts with drug makers and for pushing legislation that also benefits their industry.

Of course, if all DSM diagnoses were brain disorders, then they should be treated with pills, not psychotherapy. This increases drug sales.