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Dr. Allen Frances: November 2011 Archives

November 2011 Archives

The User’s Revolt Against DSM-5: Will It Work?

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When it comes to DSM-5, experience has proven conclusively that the American Psychiatric Association will not attend to the science, evaluate the risks, or listen to reason. A user’s revolt has become the last and only hope for derailing the worst of the DSM-5 suggestions.

Why might this work? The APA budget depends heavily on publishing profits. DSM’s sell over 100,000 copies and generate about $5 million in profit even in a dull year. This is multiplied several fold at the golden moment when any new DSM is introduced. Meaningful reform will occur only if DSM-5 faces the serious risk of a user’s boycott (replacing it with what will be the freely available ICD-10-CM ). Certainly, in any sensible world, this threat should have no part in the way diagnostic decisions are made. But DSM-5 is more of an Alice in Wonderland world — what should count least (or not at all) may now count most.

Will the petition work? It certainly faces an uphill struggle. APA will have to be shaken out of its inherent leaden complacency which has been further enhanced by the fact that DSM-IV-TR is still selling extremely well even though presumably it will soon be obsolete. The accepted APA wisdom is that the DSM monopoly over diagnosis is so strong and its audience so captive (particularly among students) that criticisms about DSM-5 content, however widespread and damning, can be simply and safely ignored.

The only serious challenge to this APA obstinacy is the Petition To Reform DSM-5. But the petition poses a significant threat to sales only if so many people sign it that DSM-5 finds itself thoroughly discredited in the eyes of both the mental health professions and the general public. I don’t know what is the magic number of signers — but probably it is somewhere between 10,000 to 50,000. Ten thousand signers would almost certainly be too few, treated by APA as merely a drop in the huge book buyers’ market. My guess is that 50,000 would seal the deal and force APA to throw in its weak DSM-5 hand by eliminating its riskiest suggestions. The actual tipping point is probably somewhere in between —who knows where?

The APA stance will also be influenced by how devastating the media response is and the public reaction. Reporters quickly come to understand the great public health risks posed by DSM-5 suggestions that all promote diagnostic inflation and loose prescription habits. Actually anyone not working on DSM-5 seems to appreciate this almost instinctively. News stories about DSM-5 are uniformly negative unless they are generated by APA press releases or appear in its own house organ. The question is how much and how prominent will be the press coverage generated by the DSM-5 petition. My guess is that it will be extensive and extremely critical of DSM-5 and may embarrass it into reform. But this remains to be seen.

And there is an important caveat here. My hope is that press coverage doesn’t tar all of psychiatry (and feed the harmful antipsychiatry movement) just because DSM-5 is such a mess. Psychiatry is essential and extremely helpful — DSM-5 is no more than an unfortunate and temporary aberration. The petition is targeted against DSM-5, not against psychiatry. APA’s likely defensive response to the petition will be to dismiss it as the work of anti-psychiatry agitators. This should not be taken seriously. The effort is intended to save psychiatry from the harm being done to it by DSM-5.

This brings us finally to the numbers game. The petition was introduced in the most obscure way possible — on Saturday, October 22 with no fanfare, no Facebook, no Twitter, no website, no press release, nothing but a naked announcement. It was launched by extremely well-meaning people who had correctly identified the problems posed by DSM-5, but who did not have the resources or technical expertise to launch a well organized media and social networking campaign. The petition gained the support it has largely on its own spontaneous steam. At first, almost no one noticed the petition but soon it began attracting an average of over 250 signers per day and has already collected a total of more than 5,000 signatures.

The good news is that this steady growth has occurred mostly by spontaneous electrical word of mouth. Many blog sites have picked up the petition, 17 additional mental health organizations have endorsed it, and people must be busy passing it on to their colleagues. This informal beginning is now slowly being augmented by more sophisticated press, Facebook, Twitter, and website methods. Press interest has already emerged spontaneously with very favorable stories in Nature News and Medscape and many other reporters are now picking up on the story.

The DSM-5 petition clearly has legs, but whether it can fly is still an open question. Its reach will depend on two things: how many people sign on and then how many additional colleagues each signer recruits. It is unknowable whether there will be a weak or powerful network effect. If each signer encourages only one (or none) other colleague, growth will be slow and linear and may top out at 10,000-20,000. This is a very substantial number of professionals frightened by DSM-5 and certainly should chasten APA to much greater caution, but given past performance it probably won’t have much effect. In contrast, let’s suppose each signer encourages five others to sign and two actually do. Then growth will become rapid and exponential and will soon force APA into a serious and much belated rethink of its worst suggestions.

These are very early days. It is far too soon to predict the fate of the DSM-5 petition and the magnitude of its potential impact. It is certainly quite encouraging that its early growth has been so steady without really trying — and that the many additional opportunities for Internet and media dissemination have not yet been fully exploited. Clearly, there is room for very substantial upside growth once the petition is more efficiently disseminated.

But there is also no room whatever for complacency; only a really massive response will force the sleeping leadership of APA to take the corrective action of rejecting the riskiest of the DSM-5 proposals. For anyone seriously concerned about the unintended consequences of DSM-5, the bottom line is clear. Please send the petition (http://www.ipetitions.com/petition/dsm5/) to five of your colleagues so that they may judge whether they would like to join. Exponential growth is the essential key to the petition’s success — and so far the petition’s growth has been no more than linear. Only the resounding voice of the people will save DSM-5 from itself.
Psychiatrists may be more reluctant than are other mental health clinicians to sign a petition questioning the safety and value of DSM-5. After all, it is the American Psychiatric Association that is sponsoring DSM-5 and there is a natural tendency to want to trust the wisdom of one's own association. We also tend to feel the greatest loyalty to our profession when it seems to be under sharp attack.

All of this is completely understandable to me. I have not felt the least bit comfortable assuming the role fate assigned me as critic of DSM-5 and of the 
APA. It was a case of responsibility calling and my feeling compelled to answer. 

If DSM-5 were not proposing some really dangerous changes, I would have stayed comfortably on the sidelines. But I think DSM-5 is too risky to ignore and that all psychiatrists should feel the same call that I did to restrain it before it is too late. 

What needs to be done to get a safe and credible DSM-5? Clearly, an independent review is needed to evaluate about a dozen of the most radical DSM-5 proposals -- the ones that are bad for patients and bad for the credibility of the APA and psychiatry. The petition urges the APA to take the necessary step of reevaluating the most questionable proposals before they are set in stone. The APA's own internal review process has failed to be rigorous or independent enough to convince anyone outside of the small (and out of touch) circle of the DSM-5 and APA leadership. 

Here are some of the issues that scare me about DSM-5 and I think should also scare you:

1) DSM-5 is suggesting many new and untested diagnoses and also markedly reduced thresholds for old ones. This will result in inaccurate diagnosis, massive diagnostic inflation, unnecessary stigma, harmful misuse of medications and misallocation of resources. 

2) Overprescription of psychotropic medications (particularly by primary care physicians) is already out of control. Remarkably, antipsychotics have become the No. 1 revenue producer of all classes of drugs. Antidepressants are fourth and anti-anxiety meds are eighth. 11 percent of the population is on antidepressants; 4 percent of kids are on stimulants. There are now more ER visits for overdoses with prescription meds than with street drugs. Most of the prescribing is done by primary care doctors who have little training, no time, and are susceptible to drug company "education" and patient pressure. Psychiatrists must take the lead in advocating for more careful diagnosis and responsible prescribing habits. The DSM-5 suggestions all go in just the wrong direction of promoting loose diagnosis and loose prescribing. 
 
3) DSM-5 has been sloppily organized and wastefully done. Every single deadline has been badly missed, leading to a mad rush at the end. The field trials will cost the APA several million wasted dollars and will yield no useful information. 

The scientific review has been cursory and has no credibility. The extended persistence of really foolish suggestions is a great embarrassment to DSM-5 and to the APA.

4) The APA leadership has been passive and unresponsive to warnings that DSM-5 has been running off the rails. They will awake from their leaden stupor and take responsible fiduciary action only under pressure from the membership. 

You may be asking yourself -- how could Frances possibly be right and all those DSM-5 experts be so wrong? The answer is simple. The people preparing DSM-5 are well meaning, smart, and expert in their highly specialized fields, but they are mostly ivory tower research types who have not had much real-world clinical experience and don't understand what will be the unintended consequences of their DSM-5 suggestions. Bob Spitzer and I have been through the mill with DSM-III, DSM-IIIR, and DSM-IV and know what are the pitfalls and dangers because we have lived through them. DSM-5 has been running blindly into a whole series of unnecessary minefields and is paying a heavy price for its inability to chart a safe course. 

Here is the worst example among many bad DSM-5 suggestions for new diagnoses (indeed, this is the one that got me alarmed enough to speak up two years ago). Attenuated psychosis syndrome will have a ridiculously high false positive rate ( 80 percent to 90 percent), no effective treatment, would promote unnecessary exposure to harmful antipsychotics, and would cause needless worry and stigma. Since studies prove conclusively that the symptoms are so very rarely predictive of psychosis, why in the world would DSM-5 give someone the stigmatizing and absurdly misleading label  of attenuated psychosis syndrome and open the door to inappropriate antipsychotic use. Recognizing all these risks, a large portion of schizophrenia and prodromal researchers are sensibly opposed to the inclusion of attenuated psychosis syndrome in DSM-5. But unaccountably, the work group stubbornly clings to its proposal and, without the petition, there is a good chance it may sneak into DSM-5. 

This one really dreadful proposal should be enough to motivate your signing the petition, but there are a dozen more that are almost as frightening. And the other DSM-5 workgroups have been equally intransigent in defending proposals that are almost equally indefensible. 

I am just one among many, many psychiatrists who fear the negative impact of a misguided DSM-5 on our patients and profession. The Society Of Biological Psychiatry published an editorial suggesting DSM-5 be scrapped. All psychiatrists who care about personality disorders are appalled by the DSM-5 personality disorders section. And here is a telling statement made by James Dillon, MD as he was signing the DSM-5 petition-"I am the chief psychiatrist in the Department of Community Health for Michigan... I will be discussing with my colleagues the merit of abandoning the DSM altogether in favor of the ICD system if DSM-5, as currently proposed (It is November 2011), is formally adopted." The APA leadership must hear from the members it is supposed to represent just how alarmed they are by the reckless DSM-5 proposals and the embarrassment they are causing our field. 

What are the risks to DSM-5 and to APA if DSM-5 is not reformed? Unless corrected, DSM-5 will be bad for patient care, may cost APA stewardship of future SM revisions, and will do grave harm to the credibility of the APA and psychiatry. The APA leadership has been asleep at the wheel and should never have allowed DSM-5 to become such a public embarrassment. 

But what is the most compelling reason for signing the petition to reform DSM-5? This is easy. Our first responsibility as physicians is to DO NO HARM!!! DSM-5 will do grave harm to the people who are misdiagnosed and then often receive unnecessary medication (especially the widely overprescribed antipsychotics that can cause such dangerous weight gains). 

On a personal note, I was enjoying a peaceful and happy beach retirement and had several times resisted Bob Spitzer's early entreaties to join him in pointing out that DSM-5 was headed for serious trouble. I saw it as Bob's fight, not mine. Only years later was I forced to speak when it became clear that the harm caused by DSM-5 was too egregious to ignore. I have complete empathy for anyone who prefers the sidelines -- I'd like to be there myself. But this one is not a close call and it is important that we all do the right thing for our patients and for psychiatry.

The petition can be accessed at: http://www.ipetitions.com/petition/dsm5/
After all this controversy and opposition, there is one thing (and one thing only) that will save the credibility of DSM-5 and guarantee its safety — a credible process of external scientific review. The American Psychiatric Association is conducting its own internal scientific review, but it strikes out badly on all four requirements that must be met before a review deserves to be taken seriously as a trustworthy stamp of approval.

The scientific review must be:

1) Open: But DSM-5 is engaged in the curious process of a confidential, secret scientific review. Real science and real scientific review are completely incompatible with secrecy.

2) Independent: But most of the people reviewing the much-reviled DSM-5 suggestions have been closely involved in the development of DSM-5 and would have to recuse themselves if this were anything like an independent review. 

3) Systematic: But the DSM-5 reviews show no method or thoroughness or consistency. Often most of papers cited were done by those making the proposals. 

4) Rigorous: But the DSM-5 review process was discredited from its moment of birth. Its very first decision was to accept the scientific credentials of a new diagnosis invented six years ago and studied by just one group. This travesty could never have occurred were such an inadequate proposal exposed to external review. 

The APA has failed to explain why anyone should accept as credible an internal scientific review process that is so closed, homegrown, cursory, and forgiving. APA also offers no explanation why external review doesn't make complete sense. There is every reason for everyone to be extremely skeptical and to demand a real scientific review. 

None of the radical and highly controversial DSM-5 suggestions should be accepted unless and until first subjected to a completely independent review of scientific merit and a risk/benefit analysis of its likely impact on actual clinical practice. The most important outcome of the DSM-5 petition could be to smoke APA out on this issue and pressure it to invite outside review.

The DSM-5 petition is now less than a month old and has been signed by almost 6,200 people. In the first week the rate was about 250 people a day. In the last few days, the rate has grown to almost 500 per day. The petition is clearly gaining momentum. It can be accessed at http://www.ipetitions.com/petition/dsm5/

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