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Roadmap to Recovery and Cure

NAMI Policy Research Institute Task Force on Serious Mental Illness Research

Background Paper

Laura Lee Hall, Ph.D.

Senior Policy Research Director

 

Introduction

In the middle of the twentieth century philosophical changes occurred in the treatment of severe mental illness. Scientists discovered medications that improved some of the symptoms of mental illnesses. The National Institute of Mental Health (NIMH) was created by the U.S. Congress to spur research into the causes of severe mental illness and to develop an approach to community-based treatment. The expectation was that with new medications, integrated community based treatment programs would be implemented and lead to significant advances in the quality of life and productivity of individuals with severe mental illness. Instead of long-term confinement in large state psychiatric institutions, individuals with severe mental illnesses were released to the community.

The results of that mid-century revolution have, unfortunately, fallen far short of hopes . Integrated treatment and support for individuals with serious mental disorders in the community mostly failed to materialize, a result of poor policy decisions, a hodgepodge of funding sources, and inadequate community facilities. Stigma has remained a major issue. Jails have become, in many cases, the long-term residence for individuals with severe mental illnesses who once resided in state mental hospitals. Research advances were modest, due to the limits of technology and scientific knowledge about the brain and biological systems. While new medications emerged, they largely reflected modifications of previous drugs, which serendipity, not a scientifically-based, rational design effort, dominated the approach.

To be sure, the birth of community-based care, the recovery movement, scientific advances, and evidence-based interventions were the positive fruits of the last century’s mental illness revolution. But the state of research and patient care in the field remains totally inadequate. The impact of managed care cost containment and carved-out insurance programs, the lack of parity health insurance, and the limits of scientific knowledge have greatly contained programs.

At the beginning of the 21st century, we stand at the cusp of a new mental illness revolution, with community-based care a real possibility. This is possible because of a growing recognition of a fragmented system of care for individuals with serious mental illnesses and scientific possibilities for research heretofore unimaginable. Building on the budding knowledge of what works and is possible for people with severe mental disorders, research and treatment system reform, hand-in-hand, can truly revolutionize severe mental illness treatment. Recovery and ultimately cures are the real promise—real possibility—of this era. It is the goal of this task force to delineate a roadmap to these goals.

Why Revolution Is Necessary: A Glass Half Full but Near Empty

The mental health system is in shambles. So concluded President Bush’s Commission on Mental Health earlier this year. This report and others attempt to appraise the failure, estimating in dollar amounts and disability costs the toll of severe mental illnesses. But such figures fail to capture the human toll of severe mental illnesses, the long-term suffering and loss, for the individual with a disabling mental disorder and for care-giving family members and friends. For many of the 5 million Americans with the most disabling mental disorders, educational and vocational progress is severely hampered. Because their illnesses disable important brain functions, finding the best treatments and services that can lead to significant improvement takes many months, even years. The mental health system and pervasive discrimination in our society effect formidable barriers to interventions that can help. For those who do not fall prey to the terrible consequences of illnesses neglected by our health care and social service systems--incarceration, homelessness, social isolation, victimization, and even death--there are still the limits of current treatments to endure: incomplete relief from symptoms and disability and a host of significant side-effects that accompany even the newest medications for these brain disorders. The final report from NAMI’s Research Task Force will provide snapshots of individual lives and families left reeling from serious mental illnesses and the way it is treated in the United States today. A compassionate society should not tolerate the state of this field.

 

Why Hope? Revolution Is Possible

But there is unprecedented hope. Never before has it been possible scientifically to probe and reveal the specific causes and pathophysiology of serious mental disorders. Standing on the shoulders of progress in the neurosciences and molecular genetics, scientists are just beginning to identify the genes contributing to serious mental illnesses, the molecules and cellular interactions that underpin these diseases. At last, in the post-genome era, we can hope to understand what leads to serious mental illness and, most importantly, then to devise precise, more effective treatments that will better redress symptoms and disability, with fewer troubling side-effects. Ongoing basic science advances even make cure and prevention a longer-term possibility for serious mental illnesses. Recent discoveries concerning the neurobiology and molecular genetics of serious mental disorders will be depicted side-by-side the human stories in the task force’s final report.

Identifying What Is Needed

Bridging the gap between the human suffering and scientific hope will not be easy, as our final report will show. To date, a growing but still inadequate amount of funding has been invested in mental illness research, despite recent gains in funding for the National Institutes of Health (NIH), including NIMH, and private sector spending, from foundations and the pharmaceutical industry. The infrastructure essential to a modern biomedical enterprise—large genetic studies; large epidemiologic studies, clinical trial networks, and population databases; interdisciplinary centers marrying cutting edge computational, genetic, molecular, imaging, and behavioral technologies, all prototypic of other chronic illnesses such as heart disease, Alzheimer’s disease, and various cancers--is beginning to be put in place, but is not nearly enough for mental illness research. No responsible government should tolerate this state.

The current treatment system itself contributes substantially to the yawning gap between suffering and hope in serious mental illnesses. The system indeed is in shambles. Interventions proven to promote improvement and recovery are too often unavailable in the real world. But the failure to provide effective treatment to people with serious mental disorders is not just a roadblock to recovery today; it is major barrier to the implementation of future discoveries. Mental health care providers, including physicians, receive scant training in the neurosciences and modern biology, let alone the treatments and services we know work. Reimbursement for persons delivering services is shamefully low. The system of care itself is utterly fragmented, a disintegrated state that obstructs not only the delivery of care today, but the hope of integrating research and newly developing technologies in the future, an integration essential for significant research advance and the implementation and monitoring of new treatments. A revolution in discovery will lead to greatly improved treatments, but system reform is also required for a new approach. Research and new science approaches that will lead to recovery must go hand-in-hand.

The Roadmap

Although there are many barriers to the research and treatment revolution that we seek and is possible, the requirements of modern biomedical research are well recognized and have been outlined in the NIH’s Roadmap to Medical Research. This effort seeks to expedite the process of scientific discovery and translation into improved treatment and health, especially for chronic illnesses. In its Roadmap report, NIH spells out an integrated vision to transform medicine, by developing tools for a deeper understanding of biological processes, promoting interdisciplinary and innovative studies, and reshaping the clinical research enterprise. The Roadmap notes the essential need, also, for better collaboration among various stake-holders, including providers, consumer groups, and the pharmaceutical and biotechnology industries. This vision fits exactly the needs of serious mental illness research and will provide an important framework for NAMI’s task force in creating the roadmap to recovery and cure for severe mental illness. The task force members will look to the initiatives of the NIH Roadmap to identify opportunities to revolutionize serious mental illness research.

The Research Task Force

NAMI’s Policy Research Institute convened this task force on research to help identify the ways in which the revolution in research and treatment summarized above can be achieved. Specifically, the task force will address the following questions in order to provide a roadmap to serious mental illness recovery and cure:

  • In light of the public health and human needs and scientific opportunities, what are the major research areas requiring investment so as to achieve the most rapid progress possible toward recovery and cure of serious mental illnesses?
  • What levels of research investment are required in the near term and over the next 5 years to achieve that goal?
  • Given the current fiscal and bureaucratic environment, how can necessary investments be secured from the National Institute of Mental Health and other sources?
  • Beyond financial resources, what research mechanisms and partnerships are necessary to significantly advance research, including changes in the service system, training of providers, and private sector research entities?
  • How can this proposed research agenda be effected and its progress monitored over time?

In preparation for the task force meeting on December 16, 2003, individual members of the task force have been asked to prepare short papers in specific areas detailing: the rationale for research investment in terms of public health need and scientific opportunities; near-term and longer term research goals; mechanisms for support; the role of non-NIMH funders and other stake-holders in advancing the area; the level of budget support needed over the next five years; barriers to implementing the research agenda; and, milestones for monitoring progress. The specific topics and authors are as follows:

  • Basic to Clinical Research: Edward M. Scolnick, M.D.
  • Clinical Trials: Jeffrey Lieberman, M.D.
  • Health Services Research: Susan Essock, Ph.D. and Robert Drake, M.D.
  • Clinical and Services Research in Children and Adolescents: Kimberly Hoagwood, Ph.D. and Barbara Burns, Ph.D.
  • Aging Research: Charles Reynolds, III, M.D.
  • Health Disparities: Jeanne Miranda, Ph.D.

Their work will be informed by previous analyses and documents, including previous National Advisory Mental Health Council reports.

The task force meeting on December 16, 2003 will inform recommendations to be presented to the NAMI Board of Directors and the preparation of a final report, documenting the research advocacy agenda for serious mental illnesses.

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