Here is why this makes me happy: The research fund will enable the Foundation to support studies and pilot projects of a type that aren’t being funded today (studies, for instance, that involve using psychiatric3 medications in a selective, limited way.) This, I believe, is the very endeavor that could lead to a new paradigm of care that truly promotes long-term recovery and wellness.
While I helped the Foundation get started, once it was up and running I resigned from the board (for reasons I will explain later in this blog.) Since then, I have been waiting for the right time to write about the Foundation, and yesterday’s news provides the perfect opportunity to do that.
The Roots of the Foundation
The Foundation came to be in a rather roundabout way. After Anatomy of an Epidemic was published in April of 2010, I began to hear from a number of mental health professionals who wanted to discuss its implications. Several psychiatrists in the Boston area contacted me, and they formed a group that began meeting on a semi-regular basis. I heard from Jack Rockefeller, who was then director of Windhorse, a provider of care in Western Massachusetts, and we discussed forming an “institute” that would fund research and “evidence-based” pilot projects that might involve using medications in a more selective way. Most important, leaders of several provider organizations and peer groups in Oregon began taking steps to publicize the issues raised in Anatomy of an Epidemic. The book looks at how psychiatric medications shape long-term outcomes, and the Oregon discussion soon focused on this question: Did our drug-based model of care need to be rethought?
I am not sure why this discussion took root in Oregon, but I think one factor was the influence of the “peer voice” in that state. MindFreedom, which is led by David Oaks, is headquartered in Eugene, and while MindFreedom may be seen by many providers in Oregon as a “radical” group, “radicalism” can be a potent force for changing the dialogue about a subject and opening minds to new possibilities. In Portland, Will Hall, who nearly a decade ago co-founded the Freedom Center in Northampton, MA, has set up a Hearing Voices group, and thus he is now bringing his considerable organizational talents to that community. Finally, there is a well-established peer organization in Portland, Empowerment Initiatives, that has been very ably led by Amy Zulich, Kristi Jamison and others, and this group also appears to be a potent voice for change.
Three providers of mental health services in Oregon took the lead in pushing forward this discussion. They were Bruce Abel, director of LaneCare, a state-funded organization that manages public mental health services in Lane County; Gina Nikkel, executive director of a state association of community mental health programs; and Bob Nikkel, who served as Oregon’s commissioner of mental health for a number of years. They — and the various peer groups — brought me to Oregon to speak on several occasions, and then, last fall, Bruce, Gina, and Bob began talking about organizing a “medication optimization” symposium. Their thinking was that psychiatrists and others would be invited to lead workshops that would focus on investigating the evidence base for psychiatric medications, both short-term and long-term, and that these workshop groups would then try to set forth “best-use” protocols. I knew others around the country who had expressed an interest in a symposium of this type, and soon, with Gina Nikkel taking the lead in organizing the symposium, the interested parties were all chatting via email about the proposed meeting (and sharing, I must add, their often wildly divergent opinions about the merits of psychiatric medications.)
Enter Virgil Stucker. Virgil has been a leader in running and developing “therapeutic communities” for more than thirty years, first at Gould Farm in western Massachusetts, and more recently at CooperRiis in North Carolina, which was founded eight years ago with the financial support and leadership4 of Don and Lisbeth Cooper. After reading Anatomy of an Epidemic, Virgil called to say that he was committed to “acting” on the issues raised in the book. He immediately became involved in the planning of the proposed symposium in Oregon, and as he threw himself into this effort, he got Don Cooper involved as well.
Now the challenge became how to fund the proposed symposium. Another reader of Anatomy of an Epidemic, Louisa Putnam, is a trustee for The Putnam Foundation, and that philanthropic organization stepped forward to provide the necessary grant. We then set up a non-profit to receive that funding, and we asked Virgil Stucker, who had experience running non-profits, to serve as chairman of the newly named Foundation For Excellence in Mental Health Care.
The Oregon Symposium
Because of financial constraints, the symposium had to limit the number of people who could attend. Fifty-four people from 13 states participated in the two-day event (February 11 and 12), including 22 psychiatrists. The other participants included administrators and directors of mental health programs (private and public), and leaders from peer groups.
The symposium featured four “workshops.” One was devoted to developing “medication optimization” guidelines for antipsychotics as a treatment for psychotic disorders; a second to developing such guidelines for antidepressants; the third for developing medication-tapering protocols; and the fourth for how such medication-optimization protocols could be introduced and covered by public and private insurance programs.
The psychiatrists who led the two medication-related workshops have yet to finish their research and write their conclusions. When they do so, their papers will be posted by the Foundation on its website (which has yet to be developed.) However, at the end of the conference, both workshop groups presented a “consensus statement” that reflected their investigations of the outcomes literature, and both statements, if incorporated into protocols, would provide a departure from current standards of care. This is particularly so in the case of the schizophrenia5 group.
That workshop was led by two Massachusetts psychiatrists, Chris Gordon and Mark Green. They and the others in the workshop concluded that there is a subset of first-episode psychotic patients who can recover without being put on antipsychotics, and thus, in certain instances, delayed administration of the drugs could prove useful (to that subset of patients.) In addition, the group concluded that there is a subset of schizophrenia patients (and patients with other psychotic diagnoses) that can do well off medications long-term. The group did not come up with any recommendations on how to incorporate such findings into drug protocols, but the consensus statement nevertheless established a rationale for funding pilot projects that would try to do just that.
The depression workshop was led by Jonathan Betlinski from Oregon Health Sciences University and other Oregon psychiatrists. After its review of the outcomes literature, the group concluded that the prescribing of antidepressants as a first response to “mild depression6” was not recommended (but rather alternative treatments should be tried first), and that there was a lack of evidence showing that antidepressants provided a long-term benefit (beyond 12 months). That consensus statement, while not at all radical, nevertheless would provide support for a protocol that sought to taper people from antidepressants after an initial period of use.
The Future of the This Initiative
The Foundation held its first official board meeting at the close of that symposium, and at that first meeting, I resigned from the board. I did so for two reasons. The first was that my serving on the board presented an obvious journalistic conflict, and thus I knew that by resigning I could more easily continue to write about this topic. The second was that I knew my presence on the board could hamper the Foundation’s future success. My two books on this topic, Mad in America and Anatomy of an Epidemic, are often seen as “controversial” books, and thus I knew that my presence on the board would open the Foundation to criticism by those who may be quite content with the current medical model of care (and profit from it.)
Virgil and the rest of the board are still in the process of fleshing out the Foundation’s mission. Theirs is a discussion that I am certain will continue to evolve and deepen as new members are brought onto the board (and onto a scientific advisory council.) But — and I am speaking now as an outsider — I hope that the Foundation works toward three goals:
a) As I wrote in Anatomy of an Epidemic, I think that this corner of medicine suffers from a lack of honest storytelling. The public has been led to believe that psychiatric medications fix chemical imbalances in the brain and thus are like “insulin for diabetes,” even though research has repeatedly failed to show that this is so. In addition, the results from long-term outcome studies, which time and again have told of better outcomes for the unmedicated cohort, have been kept hidden from the public. Our society needs an honest broker of information about the nature of psychiatric disorders and the drugs used to treat those disorders, and my hope is that the Foundation can fill that role.
b) I hope that the Foundation will continue to sponsor symposiums, where psychiatrists and others will review the relevant literature, which includes studies that focus on long-term outcomes, and develop recommendations for “best use” of the drugs. In addition, the symposiums will need to explore psychosocial therapies that have been shown to help people recover and stay well.
c) I hope that the Foundation will fund research and pilot projects that will help turn such “best-use” recommendations into practice.
And Now for The News . . .
Don and Lisbeth Cooper founded CooperRiis Healing Community eight years ago (Riis is Lisbeth’s family name.) It offers its residents “holistic” treatment — diet, exercise, group therapy, music, and farm chores are all part of the “therapeutic” environment. The farm community is located in the foothills of the Blue Ridge Mountains south of Asheville, and there is a second campus near the University of North Carolina at Asheville. Don Cooper is a board member of the Foundation for Excellence in Mental Health Care, and yesterday, he and Lisbeth announced that they plan to give $2 million to the Foundation.
“Lisbeth and I feel deeply about the mission of the Foundation to find excellence in mental health care and to facilitate change in the United States where needed,” he said. “We hope that this initiating gift will provide for strong staff leadership, important new research, and encourage other donors to join with us in funding this initiative.”
The Foundation is now planning a second symposium, which will be held in the fall and focus on the use of medications in pediatric populations. I asked Virgil for his thoughts about this gift, and I thought it would be best to simply print his answers in full.
Q. What will the donation be used for?
This wonderful resource will allow us to promote better mental health outcomes by engaging the research community to help us answer questions such as: What are the best approaches to helping people to recover from their mental health challenges while also helping them to decrease their long-term reliance on psychotropic medications?
As an educational foundation, we will use this donation to help us develop and share the emerging research-based knowledge. As ‘best approaches’ are identified, we will also use this resource to leverage the formation of new programs. Some of us with the Foundation are already involved in efforts to replicate recovery programs like the CooperRiis Healing Community. We are also deeply curious about the Open Dialogue approach from Finland. In general, we are focused on supporting the reality and dream of recovery, while appreciating broad approaches that embrace the complexity of humanity rather than reduce our despair to a chemical imbalance that is supposed to be resolved by a medication.
The Foundation is not ‘anti-medication’ but we are indeed aware that our overuse of medication in this country has not been successful in producing better, long-term mental health outcomes. As we form the ‘New Mainstream’ we seek to discover the optimal balance between medication use and the use of non-medication approaches, the combination of which will foster long-term, improved recovery outcomes.
In addition to supporting the development of a ‘New Mainstream’ this generous donation from Don and Lisbeth Cooper will help us to build a staff infrastructure for the Foundation. To date, all efforts of the Foundation have been through volunteers.
Q. What is the significance of this pledge to the Foundation?
The Foundation is new, having had its first full Board meeting on the 12th of February this year. Its first symposium “Medication Optimization in the Service of Recovery” was funded largely by the Putnam Foundation, which has also agreed to fund a fall symposium that will focus on optimizing (reducing) the use of psychotropic medications by children.
Now, with the magnanimous support of Don and Lisbeth Cooper we can capture the myriad opportunities that are arising and fully launch our efforts. There is much demoralization and despair in the mental health field today; this support from the Coopers will help us begin to restore optimism. You might say that the Coopers have provided a foundation for the Foundation.
Q. Can you speak more about the composition of your board, and your plans to create a scientific advisory council?
The Board of the Foundation consists of program providers, philanthropists, public policy leaders, a former state mental health commissioner, an international consumer advocate, and an attorney. Some nationally and internationally known psychiatrists and psychologists have also agreed to stand for election at the next Board meeting. In addition to the Board, we are beginning to assemble a Scientific Advisory Board that will help to guide the research projects that we will fund.
Q. What are the Foundation’s fundraising plans?
This donation from the Coopers has lifted us into a place of credibility and capacity. We have many opportunities that stand before us and a sense of optimism that the Foundation can seize them and help to swing the pendulum of mental health care toward improved long-term mental health outcomes and away from reductionism (the magic pill), chronicity/disability (warehousing), and imprisonment (too often the substitute mental health system).
The tasks before us are awesome and will require many millions of dollars to accomplish. We are actively looking for other philanthropic partners, like Don and Lisbeth Cooper, who are willing to donate significant resource to help us make a difference.
*first published on Psychology Today