Next Steps: More Lessons Learned From the DSM-5 Boycott

If there is no struggle, there is no progress.
                                    –     Frederick Douglass

You never know what you’re going to accomplish when you start something. Which is why you start it. Of course, you have to have a plan – always a plan; you have to be associated with other committed individuals; and you have to be fortunate enough to be moving in the same direction as the flow of history. You’ll only know if you’re on the right track when you resolve the classic dilemma of whether to do or not do by doing.

When we initiated the DSM-5 Boycott back in February, we had a plan and a series of objectives:

• Dissuade as many professionals as possible from buying and using the DSM-5; cost the financially stressed American Psychiatric Association income; and undermine the status and prestige of the DSM and the APA;
• Expand the membership of our Coordinating Committee and form working alliances with as many like-minded organizations as possible;
• And, ultimately, disrupt and damage the APA’s relationships with the key players of the public mental health system – Big Pharma, Big Insurance and Big Government.

We actually accomplished much of what we set out to do, but not in the manner that we anticipated. Lesson #1, which I wrote about earlier (The Politics of Systems Change: Lessons Learned from the Launch of the DSM-5 Boycott, 2/26/13), came in the barrage of criticism we received when we launched the Boycott. Our vulnerability – or at least the point at which we were attacked — was our apparent endorsement of the ICD-9 as an alternative to the new DSM. In fact, our suggested option to use the ICD-9 was more of a tactic, designed to enable professionals to bill for their services as well as to endorse our boycott statement. It was also based on a fact seemingly not known by most professionals and users of service, viz., that ICD codes and not DSM codes are required by all 3rd party payers for billing and reimbursement. And finally, when you’re starting something new, you and your projected audience can’t focus effectively on more than one thing at a time. For example, we had considered initiating simultaneously with the Boycott a “no-diagnosis” campaign, but were eventually convinced that would be a great distraction. We began to think of our effort to weaken the APA as happening in stages or steps, with each succeeding one adding to the momentum achieved by the one that had preceded it.

In this case, step #2, which the Committee will soon begin to discuss in detail, will be the “no-diagnosis” campaign, which we hope to initiate sometime in the Fall. The DSM-5 Boycott will continue, and we’re hoping for some synergy between the two, that the one will reinforce and feed off the other. To get a bit ahead of myself, step or stage #3 will involve a critique of the ICD-10, which is scheduled to be issued in October, 2014, and will have as its objective the further disruption of the relationships between the Big 3 and the APA. With luck and hard work, this will be launched sometime early next year. We also anticipate that the Boycott will continue apace, through to the end of CY 2014. Both steps will be discussed in further detail below.

More now on Lesson #1. Very, very few people in the U.S., professionals and users of service included, appear to care a damn about the DSM-5. Since we launched the boycott in early February, only 1939 individuals have signed our Boycott petition and, perhaps more disconcerting, only one organization of professionals, the National Alliance of Professional Psychological Providers (NAPPP), has agreed to be a Boycott co-sponsor, and that only quite recently. Just today, another psychologist-dominated organization, one with an outsized reputation as progressive, opted not to co-sponsor the Boycott. Peter Breggin must be rolling his eyes at that decision. One could argue that we’ve simply done a lousy job reaching out to folks, particularly professionals, but our FB ads indicate they and our websites have been seen by thousands of individuals.

As I wrote in my previous MIA post (Occupy APA in San Francisco: Joined in Spirit, 5/17/13), professionals have been characterized as held “captive” by the APA (by Allen Frances) and as “in denial” (by me) of the dangers posed to patients and the general public by the DSM. NAPPP’s ED, John Caccavale, thinks that most psychotherapists in private practice – he estimates there are as many as 900,000, when you add psychologists, social workers, nurses and counselors of all stripes – simply pay little attention to the DSM and rarely reference it. Which pretty much mirrors my own practice experience. His guess that the 150,000 DSM-5 pre-orders that Amazon has recorded — as per the NPR Marketplace article posted on MIA’s website — are mainly for mental health agencies. We’ll know soon enough – Amazon starts filling its orders this Monday, May 27.

Our second lesson learned was how best to collaborate with other anti-DSM-5 groups in Europe and Argentina. I had described in February (MIA, 2/26/13) our attempt to join forces with the International DSM-5 Response Committee, formed by Division 32 of the American Psychological Association, the Society for Humanistic Psychology, and the British Psychological Association. You might remember that these are the folks who posted the “Open Letter” about the new DSM addressed to the other APA and kicked off the hullabaloo that culminated in anti-DSM initiatives in several countries. We were never able to resolve a fundamental difference in outlook – academic and research-oriented psychologists vs. front-line practitioners and users of service – so we decided to each go our separate way, collaborate when we could and exchange coordinating committee members. Our association with the DSM-5 Response Committee opened the door for us to Europe, and allowed us to connect with the Stop-DSM Committees headquartered in Paris and Barcelona; which led us to an anti-DSM cadre in Buenos Aires — Fundación Sociedades Complejas, the Foundation for Complex Societies, whose focus is psychoanalytic work with children. Yes, the members of the other committees are, in the main, psychoanalysts or psychoanalytically trained, which explains in large part their antipathy towards the DSM, viewed by them as anti-patient and pro-psychoactive medication. For reasons I’ll detail below, we expect these collaborations to last and be productive so long as the Boycott continues.

Lesson #3. Being in the right place at the right time, what I referred to above as the “flow of history.” No, I’m not a fan of historical determinism, more a partisan of Branch Rickey and his old chestnut, “Luck is the residue of design.” Which means, as I understand it, if you have a solid message, persistence will eventually pay off. How else to explain NAPPP’s joining us – as I said to John Caccavale, “Out of the blue!” How else to explain that Social Justice Solutions, a blog site with a Facebook “Like” base of more than 20,000 social workers, reached out early yesterday to Joanne Cacciatore and me and answered my plaintive question, “Where are the social workers?” (MIA, 3/27/12) And how serendipitous that, thanks to Dr. Caccavale, the Academy of Medical Psychology, headed by Dr. Jerry Morris, has expressed interest in joining us. It feels like we’ve crested the rapids.

Perhaps more importantly, who could have predicted that Tom Insel and NIMH would throw the APA and the DSM under the bus? My guess is that two factors played a big part in NIMH’s decision. First, the unceasing barrage of criticism directed at the DSM – its lack of construct validity; its declining inter-rater reliability – had damaged its credibility beyond repair. On top of that, thirty years of DSM-based research had produced no biomarkers. Obama in his January State of the Union proclaimed another “Decade of the Brain” and declared his intent to seek $3 billion in funding over the next ten years to finance new research. NIMH assuredly doesn’t want a repeat of the failures of the 1990’s “Decade of the Brain” promulgated by Bush pere. It isn’t only following the money; NIMH appears determined to control it with research tools of its own making, the RDoC, or Research Domain Criteria. As I wrote in last week’s post (MIA, 5/17/13), NIMH isn’t proposing anything revolutionary; it continues to cling to the notion that “mental illness” is a “brain disease” and that NIMH-directed research will get to the cause of it. NIMH just doesn’t want the APA botching it.

As a consequence, the APA’s already huge financial hole just got deeper – no more NIMH or Big Pharma grants to its declining membership. It needs, now more than ever, big sales of the DSM to help it climb out. But the Feds have declared the DSM to be unreliable and badly damaged goods. The blood is in the water.

Which is why the DSM Boycott has to continue. Division 32 and the British Psychological Association have two initiatives in the works that are scheduled to run indefinitely:

• The Open Paradigm Project, a social media campaign just launched within the last week. Sub-titled “Testimonials of Hope 
From People who Rejected
Psychiatric Diagnoses,” a series of individuals will describe on video their harmful experiences in the public mental health system and how they managed to survive them. MIA, among other organizations, is supporting this effort, and features on its Home page an article and accompanying video about Leonard Roy Frank, a Project participant and pioneer of the Psychiatric Survivor movement.

• The Global Summit on Diagnostic Alternative (GSDA), recently established by the British Psychological Society (BPS) as “an internet-based platform for open discussion about alternatives to the current diagnostic paradigm… Its intent is to provide a lively and ongoing forum (i.e., a virtual summit) for mental health professionals concerned about the DSM-5 who are interested in discussing the past history, present scientific/conceptual status, and potential future of psychiatric diagnosis.” The GSDA mission statement is to be found on its website.

I’m assuming the GSDA is designed to continue the discussion begun by Lucy Johnstone and colleagues of the BPS when, on May 13, they issued “Time for a Paradigm Shift,” a position paper which calls for “a conceptual system not based on a ‘disease’ model” (c.f. MIA, 5/13/13).

Our French colleagues, led by Dr. Patrick Landman, are currently conducting an anti-DSM media campaign to coincide with the publication of DSM-5. When I had lunch with Dr. Landman and his wife, Dr. Dominique Tourres Gobert, and Dr. Tristan Garcia Fons, all three Boycott Committee members, when they visited New York several weeks ago, we spoke about the possibility of an international conference focused on the DSM and attendant issues to be held in Paris next year. Time will tell.

Our next step in our own effort to weaken the APA and disrupt its relationships with the Big 3 – Big Pharma; Big Insurance; the Feds — will be our “no-diagnosis” campaign. This campaign will mirror our Boycott, starting with a statement of purpose and powered by articles written by Committee members that will be posted on our Facebook Cause page and tweeted on our twitter feed. Professionals will be asked to not confer a diagnosis on those who come seeking their help; or, failing that, when a diagnosis for reimbursement purposes is necessary, for professionals to either confer innocuous diagnoses or to discuss and decide with their patients/clients, which diagnoses to use. Users of service will be asked to insist that those professionals who help them adhere to this protocol.

This is certainly not new. Paula Caplan has been encouraging professionals to do this for years. John Caccavale tells me this is how he and many of his colleagues conduct their private practices. Unfortunately, those who do work in this fashion are largely known only to themselves. My guess is that this is what Laura Delano and the MIA staff are encountering as they attempt to compile a list of practitioners willing to help users of service detox from their prescribed psychoactive meds. Our goal, like theirs, is to develop a list, state by state, city by city, of professionals willing to work collaboratively with those who seek their help, which information we will happily share with Laura and colleagues. Essentially, we intend to challenge the rationale for applying a diagnosis of any kind since no DSM diagnosis has any scientific validity. Our objective is to continue to reduce the use and the sales of the DSM-5 and to weaken the APA financially.

We will add a new ipetitions website where professionals and users of service can sign our position statement and endorse the campaign. The new website will be connected to our original ipetitions site where professionals and users of service can sign our Boycott statement. The two sites will mirror one other, differing in the specific statements signatories can endorse as well as in the information regarding state and city of residence and practice that will be requested of those signing the “no-diagnosis” statement. Given their identical objectives, we would expect both initiatives to reinforce one another, a key consideration. As I mentioned above, we will attempt to launch “no-diagnosis” in the Fall.

The final step in our campaign is by far the most difficult, since it will involve the ICD-10 and require direct contact, perhaps even confrontation, with the Federal Government, specifically the Department of Health and Human Services (DHHS), and the Senate Foreign Relations Committee (SFRC). The former, DHHS, has the responsibility to issue the new ICD codes – now scheduled for October, 2014 – and to oversee their implementation. The latter, the SFRC, has the responsibility to review all treaties negotiated with foreign powers – in this case, the United Nations and its World Health Organization; consider and attach amendments – termed Reservations, Understandings and Declarations (RUDs); and present the treaty for ratification to the Senate in session. Suggested changes in existing international treaties also have to be reviewed in hearings conducted by the SFRC.

To quote what I’ve written elsewhere (MIA, 2/26/13), “It can be anticipated that the DHHS will find itself in a vulnerable position [as we move closer to October, 2014], besieged by professional organizations and provider agencies and by Big Insurance that will continue to oppose the ICD-10 until revisions favorable to their interests have been made. … ICD-10, developed by the World Health Organization (WHO) to promote better heath outcomes, will change all the current ICD-9 codes, which were designed to facilitate billing. Big Insurance and their hospital and physician allies have been fighting adoption of the ICD-10 for the past twenty years, when the rest of the world began using it. Why should they stop now?

“We intend to intrude on this happy gathering, supporting DHHS’s intent to adhere to its October 1, 2014, adoption of the ICD-10, but urging that it remove from the new ICD all behavioral health codes. After all, if those codes represent factititious disease entities, they serve neither treatment nor epidemiological purposes, [and many professionals – or so we hope – oppose diagnosing individuals with presumed diseases that have no basis in fact]. Why adopt them? If DHHS needs to revise the ICD-10 to address the needs of practitioners and patients in the U.S., why not revise the behavioral health codes out of the U.S. version of the new ICD? A rather ambitious undertaking, [and one with little likelihood of success] but one that [if agreed to] would alter the relationships of the biggest players in the U.S. health care system. It’s one, of course, that will require a much larger group of supporters and allies than we can currently muster and might not be able to assemble in a year’s time.

“Nonetheless, it would be worthwhile to put this issue before those entities – DHHS, [the SCFR and the U.S. Senate] – that have the power to make binding decisions on these matters.” As I stressed earlier, you can never tell what fortuitous event might occur to tip the balance our way. For that very reason, we will be paying close attention to the experiences of Tina Minkowitz and her Center for the Human Rights of Users and Survivors of Psychiatry (CHRUSP) as they attempt to rally a coalition of disability rights organizations to pressure the Senate to ratify the UN’s Convention on the Rights of Persons with Disability (CRPD) without the ubiquitous RUDs. (C.F. MIA, 4/29/13)

One thing we learned in our dealings with the other anti-DSM Committees, is that European countries, with their social democratic governments and single payer health systems, are easier to impact than the U.S. Health system. The latter is dominated by profit-making corporations and by non-profit providers with enormous overheads. The biggest – I’m thinking of the giant city teaching hospitals — have on their payrolls highly paid administrators and physician specialists. Together, the non- and for-profits comprise a multi-billion dollar enterprise that continues to make millions of individuals very wealthy. Given their generous contributions to U.S. Congresspersons and their well-funded lobbyists, they also constitute a series of barriers not known in Europe or in the United Kingdom that have to be surmounted if any change is to be achieved. One need only observe the deferential treatment given the tax-evading CEO of Apple by a Senate sub-committee (NY Times, 5/23/13) to know that ordinary folks stand very little chance of getting a fair hearing in today’s U.S. Congress.

Nonetheless, we persevere on the presumption, no matter how ingenuous, that we live in a functioning democracy; we persist because, no matter the obstacles, we remain prisoners of hope.

As always, don’t mourn, organize. And let’s see what happens, with time as the leaven.