COMPLETE REPORT available in pdf
Press statements of:
Sidney M. Wolfe, MD Public Citizen Health Research Group Director
E. Fuller Torrey, M.D., Treatment Advocacy Center President
Mary T. Zdanowicz, Treatment Advocacy Center Executive Director
Jonathan Stanley, Treatment Advocacy Center Assistant Director
Frederick J. Frese III, Ph.D., Treatment Advocacy Center Board Member
Report Executive Summary
The National Institute of Mental Health (NIMH) has primary responsibility for funding research on serious mental illnesses, defined as schizophrenia, bipolar disorder, autism, and severe forms of depression, panic disorder, and obsessive-compulsive disorder. This report is the third evaluation of NIMH’s performance in this task. It covers the period 1997 to 2002, during which time NIMH’s budget doubled from $661 million to $1.3 billion.
I. The Problem
- There are approximately 11.6 million adults in the United States who have a serious mental illness in a one-year period. Of these, 5.6 million have a severe and persistent form of mental illness.
- Individuals with a serious mental illness make up one-third of the homeless population and 5 to 7 percent of the jail and prison population. At any given time, there are approximately one-quarter of a million seriously mentally ill people who are homeless or incarcerated.
- Individuals with a serious mental illness account for 58 percent of total direct costs for all mental illnesses. This amount includes over 40 billion federal dollars spent under Medicaid, Medicare, Supplemental Security Income (SSI), and Social Security Disability Income (SSDI) and is a major reason for the rapid increase in costs of these programs.
II. NIMH’s Response to the Problem
- In 2002, 28.5 percent of NIMH awards went to research on serious mental illnesses. These illnesses account for 58 percent of the total costs of all mental illnesses.
- Only 5.8 percent of all NIMH awards went to clinically relevant research on serious mental illnesses. "Clinically relevant" means reasonably likely to improve the treatment and quality of life for individuals presently affected.
- Between 1997 and 2002, the proportion of NIMH research awards for all aspects of serious mental illnesses decreased by 11 percent (from 32.1 to 28.5 percent). For clinically relevant aspects of serious mental illnesses, it decreased by 22 percent (from 7.4 to 5.8 percent).
- During those same years, NIMH rejected for funding many reasonable research proposals on serious mental illnesses and funded much research that had no relationship to any mental illness. For example, NIMH rejected funding for a treatment trial for schizophrenia but funded research on how people think in Papua New Guinea; rejected funding for research on bipolar disorder in children but funded research on self-esteem in college students; and rejected funding for research on the causes of postpartum depression but funded research on the hearing mechanism of crickets, as detailed in Appendix A.
- NIMH’s failure to fund sufficient research on serious mental illnesses is the main reason why research on these illnesses is so grossly underfunded compared to other diseases. For example, per person affected, for every $1 NIMH spent in 1999 for research on bipolar disorder, NIH spent over $12 for research on cervical cancer. For every $1 NIMH spent for research on depression, NIH spent almost $15 for research on multiple sclerosis. For every $1 NIMH spent for research on schizophrenia, NIH spent $30 on research for HIV/AIDS.
- Research on serious mental disorders is not an important part of the NIMH research portfolio.
- During the five-year period of doubling of the NIMH budget, a period that could have been used by NIMH to correct its traditional neglect of research on serious mental illnesses, the proportion of NIMH research awards allocated to serious mental illnesses actually decreased, rather than staying the same or increasing.
III. The Solution
- Congress should hold hearings to establish a minimum percentage of the NIMH budget that must be spent for research on serious mental illnesses.
- NIMH should be required to report to Congress annually how much it is spending on each serious mental illness.
- The Government Accounting Office should evaluate the NIMH research portfolio vis-à-vis the discrepancy between the allocation of NIMH resources and the public’s needs.
- Behavioral research on diseases is important, and all NIH institutes are supposed to fund behavioral research on diseases for which they have primary responsibility. NIMH should therefore support behavioral research for psychiatric disorders but not for other diseases.
- Basic neuroscience research is also important. However, allocation of responsibility for such research needs to be better coordinated between the National Science Foundation (NSF) and various NIH institutes, including NIMH.