NAMI Lies: A brief analysis of NAMI sponsored misinformation about “schizophrenia”

http://recoveryfromschizophrenia.org/2011/12/nami-lies-a-brief-analysis-of-nami-sponsored-misinformation-about-“schizophrenia”/

NAMI Lies: A brief analysis of NAMI sponsored misinformation about “schizophrenia”
Author: Ron Unger


At least as of today, if a person Googles “schizophrenia recovery” the first link that is not an advertisement is to a document titled “Understanding Schizophrenia and Recovery” authored by NAMI. (I would link to it for your convenience, but I hesitate to do anything that would further increase the Google rankings of a site that claims to be increasing “understanding” yet seems more dedicated to deliberately distorting the facts.)

I’ll start with a disclaimer. While I am seriously challenging the national organization of NAMI that is responsible for the document under discussion, I am not expressing an opinion about any local NAMI chapter. Local NAMI chapters have some degree of independence from NAMI national, and some of them are fairly progressive. But hopefully NAMI chapters that wouldn’t spread misinformation will do more to challenge the national organization that seems only too willing to lie to the public.

NAMI’s propaganda efforts start within the title of the document, which is: “Schizophrenia and Recovery; What you need to know about this medical illness.” NAMI is implying that it is a fact that “schizophrenia” is a “medical illness” and wants us to think that it is not in any way an understandable reaction to life events; but there are actually large numbers of both research studies and individual stories that point to the opposite conclusion.

The next sentence spreads more confusion, with its claim that “Schizophrenia interferes with a person’s ability to think clearly, manage emotions, make decisions, and relate to others.” NAMI wants us to ignore the possibility that the person diagnosed with “schizophrenia” may be having problems with thinking, emotions, decisions and relationships because of what happened to them and how they were treated, and wants us to think that some theoretical “illness” called “schizophrenia” did it instead.

It is worth reflection on the likely consequences of telling someone that their experience and behavior is definitely being caused by a “medical illness,” and not by what has happened to them and how they chose to react to it. A very probable effect of this sort of “explanation” is the creation of confusion within the person that in itself is likely to interfere with that person’s ability to handle thinking, emotions, decisions and relationships. Of course, if the NAMI explanation creates more difficulties for the person, those difficulties will also be attributed by NAMI to the “illness” and not to the misinformation.

On page 2, it is stated that “Research has linked schizophrenia to changes in brain chemistry and structure….” Reading this, one might assume that changes in brain chemistry and structure have been found to go along with “schizophrenia” in the same way that having high blood sugar goes along with diabetes, a condition NAMI suggests in the next sentence is “like” schizophrenia. But this simply isn’t true. Instead, researchers have only found that the people diagnosed with schizophrenia are LIKELY to have brain differences compared to the AVERAGE person who doesn’t have the diagnosis: many people diagnosed with schizophrenia don’t have the differences, and some people not diagnosed do have the differences. And it isn’t clear where all the differences come from: someare likely caused by the drugs, others by being inactive, and most all of the differences have also been found in people who suffered abuse in childhood.

This last issue, abuse in childhood, is something NAMI clearly doesn’t want anyone to associate with “schizophrenia.” NAMI states definitively in the next paragraph that “Schizophrenia is not caused by bad parenting….” NAMI makes this statement despite what is now a very large amount of research that shows that abuse in childhood dramatically raises the odds of getting a diagnosis of schizophrenia in adulthood. This applies to all types of abuse: neglect, physical abuse and sexual abuse. More severe levels of abuse have been associated with more severe levels of later psychosis in all the studies that looked for such a “dosage relationship.”

NAMI’s denial of the possible link between bad parenting, or abuse, and later “schizophrenia” amounts to collaboration with abusers in denying the effects of abuse even for people who have been severely mistreated. “You are just “schizophrenic,” you can’t blame your problems on anything that happened to you!” Such denial is itself “crazy-making” and results in further emotional abandonment of already abused people; but of course if any “symptoms” result from the “schizophrenic” person encountering such lies, it will just be blamed on “the illness.”

In making the above statements, I am definitely not saying that all people diagnosed with “schizophrenia” had abusive childhoods or that it is definitely true that any NAMI parents are abusers. There was a period of time when many clinicians would automatically blame parents when a child appeared to have “schizophrenia” but such approaches were seriously over-simplified. More complex perspectives acknowledge that children may experience abuse and trauma growing up even when parents are doing their best to keep them safe, and in other cases, children may have a non-traumatic childhood but experience problems that lead to the difficulties labeled “schizophrenia” later in life. So NAMI would have my full support if their point was that we should not assume that bad parenting caused any particular case of “schizophrenia,” but when they claim that bad parenting is definitely never a cause, they appear to have deliberately lost touch with reality. (The information on the connection between having an abuse history and a later diagnosis of “schizophrenia” is now widely enough know that I believe there is no way NAMI leadership could be unaware of it, which is why I am suggesting that NAMI is “lying” and not just misinformed or misunderstanding.)

NAMI goes on to declare in the next paragraph that “schizophrenia” is completely unrelated to “dissociative identity disorder’ (a disorder common among those severely traumatized as children.) While NAMI is only repeating here what many so-called “experts” have to say, the truth seems to be that the same sorts of problems exist for people with both diagnoses, and the “voices” that often plague those diagnosed with “schizophrenia” are not fundamentally different from the “dissociated identity states” that plague those diagnosed with “dissociative identity disorder.”

Toward the bottom of page 2, NAMI states that “Medications are crucial to symptom control….” The fact is that only some people find medications crucial to symptom control. Many people find ways to completely recover and definitely do not need medications. Others don’t recover but also find that the medications don’t make things better and may make things worse. Of course, some people do find the medications helpful, but even in those cases it is often unclear if they are truly necessary; it may just be that the right alternatives have not been offered to some of these people.

I won’t even bother trying to sort out the distortions in the rest of the document. It isn’t all misinformation: NAMI mixes in some facts and some helpful details. But the existence of so many false claims in just the beginning of a document indicates that NAMI is more committed to spreading propaganda than it is to the truth.

I hope that if enough of us comment on these sorts of lies, we can embarrass NAMI into cleaning up its act. And by confronting NAMI, we can also make some headway in getting more accurate information out to those who need it, accurate information that is seriously overdue for most of those in our mental health system.
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Link to article on 29 Medical Causes of Schizophrenia

NYT: Dr. Drug Rep

Dr. Daniel Carlat tells us how he and other physicians are wooed - and very well paid - to become "Doctor" drug reps.
He is an assistant clinical professor of psychiatry at Tufts University School of Medicine and the publisher of The Carlat Psychiatry Report.

As the reps became comfortable with me, they began to see me more as a sales colleague. I received faxes before talks preparing me for particular doctors. One note informed me that the physician we’d be visiting that day was a “decile 6 doctor and is not prescribing any Effexor XR, so please tailor accordingly. There is also one more doc in the practice that we are not familiar with.” The term “decile 6” is drug-rep jargon for a doctor who prescribes a lot of medications. The higher the “decile” (in a range from 1 to 10), the higher the prescription volume, and the more potentially lucrative that doctor could be for the company.

A note from another rep reminded me of a scene from “Mission: Impossible.” “Dr. Carlat: Our main target, Dr. , is an internist. He spreads his usage among three antidepressants, Celexa, Zoloft and Paxil, at about 25-30 percent each. He is currently using about 6 percent Effexor XR. Our access is very challenging with lunches six months out.” This doctor’s schedule of lunches was filled with reps from other companies; it would be vital to make our sales visit count.+

Naïve as I was, I found myself astonished at the level of detail that drug companies were able to acquire about doctors’ prescribing habits. I asked my reps about it; they told me that they received printouts tracking local doctors’ prescriptions every week. The process is called “prescription data-mining,” in which specialized pharmacy-information companies (like IMS Health and Verispan) buy prescription data from local pharmacies, repackage it, then sell it to pharmaceutical companies. This information is then passed on to the drug reps, who use it to tailor their drug-detailing strategies. This may include deciding which physicians to aim for, as my Wyeth reps did, but it can help sales in other ways. For example, Shahram Ahari, a former drug rep for Eli Lilly (the maker of Prozac) who is now a researcher at the University of California at San Francisco’s School of Pharmacy, said in an article in The Washington Post that as a drug rep he would use this data to find out which doctors were prescribing Prozac’s competitors, like Effexor. Then he would play up specific features of Prozac that contrasted favorably with the other drug, like the ease with which patients can get off Prozac, as compared with the hard time they can have withdrawing from Effexor.

The American Medical Association is also a key player in prescription data-mining. Pharmacies typically will not release doctors’ names to the data-mining companies, but they will release their Drug Enforcement Agency numbers. The A.M.A. licenses its file of U.S. physicians, allowing the data-mining companies to match up D.E.A. numbers to specific physicians. The A.M.A. makes millions in information-leasing money.

Once drug companies have identified the doctors, they must woo them. In the April 2007 issue of the journal PLoS Medicine, Dr. Adriane Fugh-Berman of Georgetown teamed up with Ahari (the former drug rep) to describe the myriad techniques drug reps use to establish relationships with physicians, including inviting them to a speaker’s meeting. These can serve to cement a positive a relationship between the rep and the doctor. This relationship is crucial, they say, since “drug reps increase drug sales by influencing physicians, and they do so with finely titrated doses of friendship.”

Link

Former drug rep Gwen Olsen talks about manipulating doctors.

What don't we know about the pharmaceutical industry?

A NYT Freakonomics quorum.
Link

From the page:

Dr. Harlan Krumholz, professor of medicine, epidemiology, and public health at Yale:

"Science and the public good in a capitalist society depend on the free flow of unbiased information, but it doesn’t always work that way. Events are revealing that many pharmaceutical companies, along with their consulting academic physicians, have engaged in practices that obscure or misrepresent information about their products. Does the public realize the depth of these practices, and their implications for patient care?

Most physicians continue their education and keep up to date with new science by attending lectures given by experts, with the assumption that the information they hear is unbiased. But pharmaceutical companies regularly pay high-profile scientists and physicians, either directly or indirectly, to speak on topics relevant to their products. At a scientific meeting in Europe, I watched an American colleague — a famous cardiologist who was being well compensated for his participation — practice his upcoming speech in front of drug company marketers. After his practice talk, they replaced some slides with ones that presented their drug in a more favorable light. The speaker initially resisted the change, but finally acceded, and his talk the next day was a strong endorsement of his sponsor’s drug."

WSJ: Surgeon Didn't Disclose Company Ties

... a sweet news item ...
"UCLA Says Surgeon Didn't Disclose Company Ties


By DAVID ARMSTRONG

A top surgeon at the University of California at Los Angeles has lost his position as executive director of its spine center and faces an investigation by the school into his research after allegedly failing to disclose he was being paid by several companies whose products he was studying.

Between 2002 and 2008, Jeffrey Wang repeatedly failed to report on forms filed with the state and with the medical school that he was receiving consulting payments, stock options and royalties from five companies on whose products he was conducting research, according to the university. The failure to report these relationships "violated university guidelines," the school said.

"UCLA regrets that in the case of Dr. Jeffrey Wang, associate professor of orthopedic surgery, a pattern of non-disclosure could have persisted without our knowledge," the school said in a statement. "We are committed to examining our processes to determine how, as an institution, we will prevent similar problems in the future."

Dr. Wang didn't return a telephone call to his office seeking comment. He remains on the school faculty.

Dr. Wang was removed as co-executive director of the UCLA Comprehensive Spine Center. A university spokeswoman said the school is considering further sanctions against him.

The university also has appointed a committee to investigate Dr. Wang's work and determine whether the payments from companies affected his research and "if there are any mitigating actions needed to ensure the integrity of the research results." UCLA said it would make the results of that inquiry public, but that so far it has not found evidence of research misconduct. His research involved studying the products in both animals and humans.

UCLA alleges that Dr. Wang failed to disclose financial interests in connection with research projects sponsored by DePuy Spine Inc., a unit of Johnson & Johnson, which paid Dr. Wang $125,900 in royalty and consulting payments from 2002 through 2008; Facet Solutions Inc., a company in which Dr. Wang acquired options for 18,000 shares in 2004; Paradigm Spine LLC, an entity related to another company in which Dr. Wang received options for 20,000 shares; FzioMed Inc., which paid Dr. Wang $144,000 from 2002 through 2008; and medical-device maker Medtronic Inc., which paid Dr. Wang $275,000 in royalty and consulting payments from 2003 through 2008.

In the case of Medtronic, Dr. Wang did report some, but not all payments from the company, according to the school.

Dr. Wang published at least two favorable evaluations of Oxiplex, a product from FzioMed to prevent spinal adhesions. In 2004, he was the author of a study published in Neurosurgical Focus that found Oxiplex "easy to use and safe." That study noted FzioMed provided funding for the study, but didn't cite the payments to Dr. Wang.

A 2008 abstract published in the Spine Journal by Dr. Wang and a co-author found "consistent clinically significant improvement in outcomes resulting from the use of Oxiplex gel in lumbar spine surgery." While the abstract doesn't indicate Dr. Wang had a financial relationship with FzioMed, he is listed as a consultant to the company elsewhere in the journal.

A Food and Drug Administration advisory committee in July 2008 voted against approving Oxiplex for sale in the U.S. because it wasn't convinced the product was effective.

Most medical schools require doctors to report financial relationships and often have rules limiting how much they can receive from companies whose products are being studied. But medical schools often have difficulty verifying whether financial information filed by doctors is accurate.

A handful of states, including Massachusetts and Minnesota, have instituted public-reporting requirements in which drug and medical-device companies must disclose payments to physicians for many kinds of services, including consulting.

Two U.S. senators, Republican Charles Grassley of Iowa and Democrat Herb Kohl of Wisconsin, are pushing for a federal law that would require companies to report payments to doctors of more than $100."

WSJ -What s doctor did that was worth $1M

This is just a little gator - cleaning up the whole swamp will be a big job.

Diagnosis: Greed

Sir William Osler

"About three decades ago, it became possible to make serious money as a university researcher. Not that the money was so bad before, of course. It was respectable. But it wasn’t Wall Street-type money.
That changed in the early 1980s with the passage of legislation that allowed universities to patent their publicly funded research results and then grant exclusive licenses to pharmaceutical companies. The public-private wall came down. The universities received royalties on the drugs, and the royalties were split between the researchers and the departments. Start-up companies were spun off and sold. University researchers became, essentially, partners to industry.

The change wasn’t just structural, however. There was a cultural shift, a kind of boundary melt.
“Greed became respectable,” Angell, a professor of global health and social medicine at Harvard Medical School and the former editor in chief of The New England Journal of Medicine, recalled. “There used to be a sort of tension between doing well and doing good for medical researchers. If they wanted to make a lot of money in a high-risk sort of job they could work for industry. If they wanted to do important, exciting research they stayed in academia and they had a comfortable life but not great wealth.

“Before 1980, they were aware of this tension,” she said. “Before 1980, those who went into industry were held in some disdain. With Reagan, all this changed. There was a strong feeling that the world divided into winners and losers. In medical research this just has had enormous implications.”

It’s had enormous implications for our world generally. On Wall Street, change had to come via catastrophe. Let’s hope it won’t take a disaster to bring sense back to medicine."

Article here.



Also see BLIND FAITH, a four-part series about Pharma blandishments in Academe, here.