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Missions Impossible: The Ongoing Failure of NIMH
To Support Sufficient Research on Severe Mental Disorders

September 2000

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NEW! OPED BY TAC PRESIDENT E. FULLER TORREY, M.D., WALL STREET JOURNAL, JULY 2005

NEW! TAC LETTER OF SUPPORT TO REP. RANDY NEUGEBAUER (JUNE 2005)

STATEMENTS: E. FULLER TORREY, M.D. | SIDNEY M. WOLFE, M.D. (PUBLIC CITIZEN)| MARY ZDANOWICZ | JONATHAN STANLEY | FREDERICK J. FRESE III, Ph.D

PRESS RELEASES: BY REP. RANDY NEUGEBAUER (SEPT. 2004) | BY THE TREATMENT ADVOCACY CENTER AND PUBLIC CITIZEN (NOV. 2003)

PRIOR REPORTS: MISSIONS IMPOSSIBLE (SEPT. 2002) | A MISSION FORGOTTEN (DEC. 1999)

Home page for NIMH research tracking project

Authors

E. Fuller Torrey, M.D., President, Treatment Advocacy Center
Irving I. Gottesman, Ph.D., Department of Psychology, University of Virginia
John M. Davis, M.D., Department of Psychiatry, University of Illinois
Michael B. Knable, D.O., Stanley Foundation Research Programs
Mary T. Zdanowicz, J.D., Executive Director, Treatment Advocacy Center

Prepared by:
The Treatment Advocacy Center

Summary

A total of 1,342 new research grants being funded by the National Institute of Mental Health (NIMH) in 1999 were analyzed. These were compared to our previous study that focused on NIMH grants being funded in 1997. The findings:

________________________

* NIMH has defined "severe mental disorders" to include schizophrenia; manic-depressive illness (bipolar disorder); the severe forms of depression, obsessive-compulsive disorder, and panic disorder; and autism.

The numbers used in this report are based on best-estimate, one-year prevalence rates for adults ages 18 and over as cited in Mental Health: A Report of the Surgeon General (Department of Health and Human Services, December 1999) combined with the official U.S. Census projections for 2000 (medium range estimates). The numbers do not include individuals under age 18 except for autism.

 

 

Introduction

In December 1999, we published A Mission Forgotten: The Failure of the National Institute of Mental Health To Do Sufficient Research on Severe Mental Illnesses.1 Based on a review of NIMH funded research grants in 1997, it reported that only 33.2 percent of NIMH research grants supported research on severe mental disorders, and only 7.9 percent were directed to clinical and treatment-related research on those disorders. A Mission Forgotten did not say that NIMH should not carry out basic research, or that it should not focus on psychosocial aspects of disease. The report did say that NIMH had lost sight of its priorities by its relative neglect of severe mental disorders. And by losing sight of its priorities, NIMH had lost its way in the woods.

NIMH publicly responded that it was "proud of its portfolio of research on mental illnesses" and claimed that it "supports substantial and indeed increasing research efforts on the treatment of these disorders, which are central to our mission."2 However, the Director of NIMH acknowledged in Science that some of the research criticized in A Mission Forgotten were studies that he was "not pleased to be funding," and he promised "to continue phasing out questionable or irrelevant research."3

The following study of newly funded NIMH research grants is a follow-up to the review of NIMH’s 1997 research portfolio. To ascertain how much change had taken place, all research grants categorized by NIMH as "new grants" as of August 2000 were reviewed. Most of these were initially funded in 1999 or 1998, and a few were funded prior to 1998. As described in the Appendix, all 1,342 "new" NIMH grants given to outside institutions were assessed using criteria identical to the previous study. The study did not include NIMH contracts, including three recently awarded contracts that focus on treatment aspects of severe mental disorders.

The Appendix also includes detailed instructions on how to use the Internet to access the abstracts for NIMH-funded research grants; therefore, anyone can review these grants and come to their own conclusions regarding the grants’ relevance to severe mental disorders.

The main questions asked by the present study are:

 

Results

The results of the review of NIMH’s 1999 new research grants can be summarized in general terms and under each of the specific disorders categorized by NIMH as severe mental disorders.

 

1. General

Only 22.1 percent of all 1999 NIMH research grants related to one or more severe mental disorders (Table 1). In the review of the 1997 NIMH research grants, the similar figure was 33.2 percent. Since research within NIMH (intramural) was included in the 1997 but not in the 1999 review (see the Appendix, Methodology), this would account for some portion of the difference. What can be said is that less than one-quarter of the most recent NIMH research grants are targeted to severe mental disorders and there clearly has been no improvement in the percentage of grants targeted to severe mental disorders since 1997.

When the research grants related to severe mental disorders are broken down by whether or not they target clinical or treatment aspects of these disorders (Table 2), only 8.3 percent of all 1999 NIMH research grants are clinical or treatment-related. For the 1997 research grants, the similar figure was 7.8 percent. This increase came exclusively from clinical research on schizophrenia, which improved from 1.3 percent to 2.6 percent; for the other disorders, there was no improvement.

This paucity of research on clinical and treatment aspects of severe mental disorders is striking. Similarly, there appears to be little effort to translate basic biological or psychosocial research into improved treatments. If the National Cancer Institute, for example, were spending just 8.3 percent of its total budget on the most important forms of cancer, there would be a public outcry. It is a question of balancing public needs with the research agenda of the research institute, and that balance is currently not being achieved by NIMH.

 

2. Schizophrenia

It is estimated that approximately 2.2 million adult Americans are affected by schizophrenia in a one-year period. The National Advisory Mental Health Council estimated in 1990 that the annual cost of schizophrenia was $33 billion in the United States.4

In 1999, NIMH was funding 110 new research grants to study schizophrenia, or 8.2 percent of the total new grants. Of these, 35 were related to clinical or treatment aspects of schizophrenia.

In 1999, NIMH was also funding more than 110 research grants that should logically have been assigned to other NIH Institutes. NIMH funded 107 research grants related to AIDS alone, almost as many as the total number of funded research grants related to schizophrenia. A few of the AIDS-related grants were relevant to the primary mission of NIMH (e.g., "Assessing HIV Risk in Severely Mentally Ill People," 1R01MH60073-01, Dartmouth College), but the majority were not (e.g., "Sexually Transmitted Disease Recognition and Care Seeking among Women in Vietnam," 1R03MH58482-01, Johns Hopkins University).

The following are additional examples of 1999 research grants funded by NIMH that should logically have been assigned to the other NIH Institutes noted. NIH has clearly stated that all NIH Institutes should support behavioral research on the diseases they study, and that just because there is a behavioral component to the research does not make it the responsibility of NIMH.

Should have been assigned to the National Cancer Institute

These research projects should have been funded by the National Cancer Institute, which currently is funding over 1,000 research grants on breast cancer, including behavioral aspects.

Should have been assigned to the National Heart, Lung, and Blood Institute

Should have been assigned to the National Institute of Allergy and Infectious Disease

Should have been assigned to the National Institute on Aging

Should have been assigned to the National Institute of Child Health and Human Development

Should have been assigned to the National Institute of Neurological Disorders and Stroke

Should have been assigned to the National Center for Complementary and Alternative Medicine

It should be clearly stated that many of the research projects listed above are relevant to health issues and should be supported. The question, however, is by whom. Insofar as NIMH allocates its resources to problems such as breast cancer, lung transplantation, and Alzheimer’s disease, it has fewer resources to allocate to problems such as schizophrenia.

 

3. Major depression

It is estimated that approximately 9.9 million adult Americans are affected by major depression in a one-year period.

In 1999 NIMH was funding 120 new research grants to study major depression, or 8.9 percent of the total new grants. Of these, 57 were related to clinical or treatment aspects of major depression.

In 1999, NIMH was also funding more than 120 new research grants that should have logically been assigned to other government agencies outside of NIH. The majority of these should have been assigned to the National Science Foundation (NSF), especially its Directorate of Social, Behavioral and Economic Sciences. In addition to NSF, NIMH appears to have taken on as its mission the responsibilities of many other government agencies. The following are examples from NIMH’s 1999 funded grants that logically should have been assigned to the other government agencies noted:

Should have been assigned to the Department of Education

Should have been assigned to the Department of Justice

Should have been assigned to the Department of State

Should have been assigned to the National Transportation Safety Board

Again, it should be clearly stated that many of these research projects are worthwhile and should be supported. The question, however, is by whom. Insofar as NIMH allocates its resources to problems such as reading disability, ethnopolitical warfare, Bosnian refugees, and railroad engineers, it has fewer resources to allocate to problems such as major depression.

 

4. Manic-Depressive Illness (Bipolar Disorder)

It is estimated that approximately 1.6 million adult Americans have manic-depressive illness (bipolar disorder I; does not include bipolar disorder II) in a one-year period. A 1991 analysis of costs estimated that manic-depressive illness cost the United States approximately $45 billion that year ($7 billion in direct costs; $38 billion in indirect costs).5

In 1999, NIMH was funding 32 new research grants to study manic-depressive illness, or 2.4 percent of the total new grants. Of these, 7 were related to clinical or treatment aspects of manic-depressive illness.

In 1999, NIMH was also funding 7 research grants to study pigeons. These are:

5. Severe obsessive-compulsive disorder

It is estimated that approximately 4.4 million adult Americans are affected by obsessive-compulsive disorder in a one-year period.

In 1999, NIMH was funding 11 new research grants to study obsessive-compulsive disorder, or 0.8 percent of the total new grants. Of these, 4 were related to clinical or treatment aspects of obsessive-compulsive disorder.

In 1999, NIMH was also funding 4 research grants to study fish. These are:

6. Severe panic disorder

It is estimated that approximately 7.6 million adult Americans are affected by panic disorder in a one-year period.

In 1999, NIMH was funding 14 new research grants to study panic disorder, or 1.0 percent of the total new grants. Of these, 8 were related to clinical or treatment aspects of panic disorder.

In 1999, NIMH was also funding 8 research grants to study songbirds. These are:

7. Autism

In its 1993 report to Congress, the National Advisory Mental Health Council listed autism as one of the "severe mental disorders." According to the Department of Health and Human Services, the prevalence of autism is estimated to be approximately 1 in 500. Using census population projections for 2000, this means that approximately 550,000 American have autism. Research on autism is also funded by other NIH institutes, in addition to NIMH.

In 1999, NIMH was funding 9 new research grants to study autism, or 0.6 percent of the total new grants. Of these, one was related to clinical or treatment aspects of autism.

In FY 1999, NIMH was also funding one research grant to study crickets. That is:

It should be reiterated that many of these animal research projects are worthwhile and should be supported. Research on the fruit fly and earthworm, for example, has been essential for advancing knowledge in genetics and in development of the nervous system. The question, however, is how much such research NIMH should be supporting. Insofar as NIMH allocates more resources to pigeons, fish, songbirds, and crickets, it has fewer resources to allocate to the study of manic-depressive illness, obsessive-compulsive disorder, panic disorder, and autism.

 

Discussion

NIMH is funding some important basic biological and psychosocial research and has contributed in important ways to research progress in the Decade of the Brain. Its support of training programs to produce the next generation of researchers has also been essential. NIMH is also funding some very useful and important research on severe mental disorders. Examples of such research grants funded in 1999 include "Relapse of Bipolar Disorder during Pregnancy (1K23MH01609-01A1, Massachusetts General Hospital); "Neurological Targets of Antidepressants" (1R01MH58916-01, University of Washington); "Basal Ganglia Function in Obsessive-Compulsive Disorder" (1R01MH60219-01, Massachusetts General Hospital); "Modeling the Atypical Antipsychotic Profile" (1R15MH55854-01A1, University of Wisconsin at Milwaukee); and "Serious Mental Illness and Outcome of Mandated Services" (1R24MH57815-01, University of Pennsylvania). NIMH is also to be commended for recently funding on contract three large trials to study the treatment of schizophrenia, depression, and manic-depressive illness; the cost of these three contracts totals approximately $17.6 million per year.

The main question posed by this review is why NIMH is not supporting more such research. Why are only 22.1 percent of new research grants targeted at severe mental disorders, and only 8.3 percent targeted at clinical and treatment aspects of these disorders?

Given NIMH’s own studies, possible answers to these questions are difficult to imagine. In July 2000, NIMH released a report entitled The Economic Cost of Mental Illness, 1992,6 which also included 1995 data. The report estimated that in 1995, the total direct and indirect costs of all mental disorders, not including substance abuse, were $184.7 billion. Of this amount, 58 percent, or $107.1 billion, were costs related to severe mental disorders. Moreover, 70 percent of all direct care costs (treatment, medical expenditures, health support) related to all mental disorders were costs related to severe mental disorders.

 

 

The NIMH report also estimated the cost of severe mental disorders in other than purely economic terms. Severe mental disorders were said to be responsible for 87 percent of all premature deaths due to mental illness; in 1995, this would have been 32,700 deaths associated with severe mental disorders, including 72 percent of all suicides that year. The report also said that severe mental disorders are responsible for almost all homeless persons who are mentally ill, as well as for 10 percent of all arrests and jail costs associated with public disorder.

It is therefore clear that severe mental disorders are often fatal diseases if they are not treated adequately. Yet NIMH has allocated remarkably few resources to treatment research. This is unacceptable on humanitarian grounds alone, but it is also unacceptable on economic grounds, since adequate treatment saves money. For example, a recent analysis of the economic effect of using lithium to treat manic-depressive illness calculated that its use saved over $8 billion per year between 1970 and 1991.7 Given NIMH’s current research portfolio, the research being funded is unlikely to lead to important new treatments.

If the funding priorities of NIMH are looked at from the point of view of the federal government, they appear even more perplexing. According to the recent NIMH report, in 1995 severe mental disorders cost the federal government alone $57.4 billion.6 Another recent report estimated that federal expenditures for all mental disorders (not including substance abuse) increased 141 percent between 1987 and 1997.8 Federal OASDI (SSDI) and SSI for the support of individuals with "mental disorders other than mental retardation" has been increasing especially rapidly. Federal SSI payments for mentally ill individuals, for example, increased from $0.5 billion in 1976 to $7.4 billion in 1998, an increase of almost one-half billion dollars each year.9 Very few federal expenses have been increasing this rapidly, which logically leads to the question of why a greater share of federal research dollars is not being spent on these disorders.

It should also be kept in mind that NIMH is the only government source for research on severe mental disorders. Basic neuroscience research has many other options, as noted in our previous reports, including other NIH institutes, the National Science Foundation, and heavy investment from the Howard Hughes Foundation. Basic behavioral research also has many other options, including other NIH institutes and the National Science Foundation. But for research on severe mental disorders, there are no other government options; if NIMH does not do it, it will not be done.

One reason for this underfunding of research on severe mental disorders by NIMH is that, as a research institute, NIMH is removed from the reality and consequences of severe mental disorders. For example, two major crises—epidemics, really—in the United States are the number of individuals with severe mental disorders who are in jail and the number who are homeless. Despite widespread public acknowledgment of the severity of these problems, among the new research grants funded by NIMH, just two grants addressed the problems of the mentally ill in jails ("African American Mental Health Research Program," 1P01MH58565-01, University of Michigan, and "Mental Health Services for Arrestees with Mental Illness," 1R03MH59709-01, Yale University), and only one grant addressed the problem of severely mentally ill homeless persons ("Preventing Recurrent Homelessness in the Mentally Ill," 1F31MH12018-01, Adelphi University).

The fundamental problem with NIMH’s research priorities, then, is not that NIMH has no mission but rather that it has 100 missions. It believes that its missions include breast cancer, lung transplantation, cognitive processes of birds, alertness in railway engineers, reading problems, and students’ transition to middle school, to name only a few.

This fundamental problem goes back to the very inception of NIMH in 1946, when the decision was made to name it the National Institute of Mental Health rather than the National Neuropsychiatric Institute, the name proposed in the original legislation creating the Institute. Mental health encompasses everything and provides a rationalization for NIMH to study whatever it pleases. This breadth appears to increase each year, so that among the 1999 NIMH funded research grants were the following:

In summary, it appears that too much of what NIMH does with its research funds is "just fun" and too little is "just important." Returning to the original questions posed by this review:

A Mission Forgotten concluded that NIMH had lost its research way in the woods. The present review suggests that NIMH may have even lost the woods.

 

Recommendations

  1. NIMH should rapidly and markedly increase research spending for severe mental disorders in general, and for the clinical and treatment aspects of severe mental disorders in particular. For example, to be spending less than one percent of NIMH research resources on manic-depressive illness, which affects 1.6 million adult Americans, obsessive-compulsive disorder, which affects 4.4 million adult Americans, panic disorder, which affects 2.6 million adult Americans, or autism, which affects 550,000 Americans, is simply unacceptable.
  2. Congressional hearings should be held to clarify the primary mission and priorities of NIMH. A standard should be established for what percentage of NIMH research resources should go to severe mental disorders. Congressional hearings are also necessary because some members of Congress do not understand the primary mission of NIMH and mandate it to study various social problems.
  3. Consideration should be given to merging NIMH with the National Institute of Neurological Disorders and Stroke (NINDS) to create a National Brain Research Institute.
  4. As an interim measure, the name of the National Institute of Mental Health (NIMH) should be changed to the National Institute of Mental Illnesses (NIMI).
  5. Consideration should be given to shifting large amounts of basic behavioral research from NIMH to the National Science Foundation. The behavioral research that remains at NIMH should have some relevance to the study of psychiatric disorders. This is consistent with the recommendations of the Report of the National Advisory Mental Health Council Behavioral Science Workgroup issued in May 2000.

 

Appendix

Methodology of Study

The abstracts of all research grants listed by NIMH as new grants were reviewed through the CRISP (Computer Retrieval of Information on Scientific Projects) database. CRISP can be used by anyone with access to the Internet.


How to Access Information on NIMH-Funded Research Grants

To access abstracts: In the address box on the Internet, enter www.nih.gov, click on "Funding," and then under the heading "Grants Page," click on "CRISP database." For currently funded grants, click on "Current Award Information." Current research grants can then be searched by search term (e.g., schizophrenia), name of PI (Principal Investigator), or grant number. Under "Award Type," indicate whether you want new, competing, non-competing, or all types of awards. Then indicate which NIH institute you wish to review (e.g., NIMH). Clicking on "Submit Query" yields a "Hit List" that includes grant number, PI, and title. Clicking on the title yields the abstract, which provides details on the project and includes the name of the state in which the principal investigator’s research institution is located. You will need to know the state to obtain information on the amount of money a specific grant has been funded.

To obtain information on funding: From www.nih.gov, click on "Funding," then on "Grants Page," and then on "Awards Data." For current grants, go to the heading "Geographic Area" and click on "Awards by State and Foreign Site." For earlier recent fiscal years, go to the heading "Reference Shelf" and click on "Historical Data." For both current and earlier grants, click on the appropriate fiscal year and then on the state. After the page is completely downloaded, use your browser’s ‘find’ function to search for grant number, PI name, or grant title. The ‘find’ function is usually found under "Edit" on the main toolbar and can also often be accessed by pressing the control key and the ‘f’ key at the same time.

 

The abstracts were all rated by the senior author as disease-related or treatment-related, using criteria identical to that used on our survey of 1997 NIMH research grants:

Disease-related: The research grant was judged to be disease-related if the abstract revealed research aimed in an explicit way at understanding the causes or improving the treatment, care, or rehabilitation of the disease. Thus, a rat experiment targeting a specific serotonin receptor that has been linked to major depression was judged to be depression-related. Conversely, a rat experiment targeting a frontal lobe protein that has not been linked to any severe mental disorder was not judged to be disease-related even though the abstract mentioned in its last sentence that schizophrenia has been linked to frontal lobe dysfunction.

Treatment-related: Each grant judged to be disease-related was also assessed as to whether it was related to clinical, treatment, or rehabilitative aspects of the disease. This category was interpreted liberally and included, in essence, any research that might help someone who presently has the disease. The vast majority of disease-related but not treatment-related research grants involved research on possible causes of the disease.

The CRISP database for NIMH included 1,477 new research grants when this evaluation was carried out in August 2000. Of these, 1,342 were extramural grants (research grants given to researchers outside of NIMH) and 135 were intramural grants (research approval of projects being carried out within the intramural program of NIMH, i.e., on the NIH campus). The intramural research abstracts can be identified by having a "Z" in their grant number. The intramural grants are not really grants, and most of them are not "new"; rather, they are re-approvals for intramural projects, most of which have been ongoing for many years. Since the purpose of this review was to evaluate new research grants given by NIMH, the intramural grants were not included. Therefore, only the 1,342 extramural grants were reviewed. Note: The inclusion of intramural projects in our review of 1997 grants and exclusion of them in our review of 1999 grants is one reason why the percentage of NIMH grants related to severe mental disorders has decreased.

The other major difference in our review of grants for 1999 compared to 1997 is that we made an attempt to ascertain the purpose of NIMH research grants that were not related to one of the severe mental disorders. This is reflected in our categorization of those that should have been assigned to a different NIH Institute and those that should have been assigned to another government agency outside of NIH.

 

 

References

  1. Torrey, E. F., Knable, M. B., Davis, J. M., Gottesman, I. I., Flynn, L. M. A Mission Forgotten: The Failure of the National Institute of Mental Health To Do Sufficient Research on Severe Mental Illnesses. Arlington, Va.: National Alliance for the Mentally Ill, December 1999.
  2. NIMH. Statement on the Report Released on December 6, 1999, by the National Alliance for the Mentally Ill and the Stanley Foundation Research, December 7, 1999.
  3. Holden, C. Mental health agency shrugs off critics. Science 286: 2248, 1999.
  4. Health Care Reform for Americans with Severe Mental Illnesses: Report of the National Advisory Mental Health Council. American Journal of Psychiatry 150: 1447–1465, 1993.
  5. Wyatt, R. J., and Henter, I. An economic evaluation of manic-depressive illness—1991. Social Psychiatry and Psychiatric Epidemiology 30: 213–219, 1995.
  6. Harwood, H. et al. The Economic Cost of Mental Illness, 1992. Rockville, Md.: National Institute of Mental Health, July 2000.
  7. Wyatt, R. J., Henter, I. D., and Jamison, J. C. Lithium revisited: savings brought about by the use of lithium, 1970–1991. Psychiatric Quarterly, in press.
  8. Mark, T. L. et al. Spending on Mental Health and Substance Abuse Treatment, 1987–1997. Health Affairs 19: 108–120, 2000.
  9. OASDI and SSI federal expenditures were calculated from the Social Security Bulletin: Annual Statistical Supplement, 1977–1999.

 

 

Table 1. NIMH Research Grants Related to Severe Mental Disorders

  1997 Research Grants 1999 Research Grants*
 

number

(total = 2,029)

percent

of total

number

(total = 1,342)

percent

of total

Schizophrenia

235

11.6%

110

8.2%
Major depression

279

13.8%

120

8.9%
Manic-depressive illness (bipolar disorder)

71

3.5%

32

2.4%
Obsessive-compulsive disorder

30

1.5%

11

0.8%
Panic disorder

58

2.9%

14

1.0%
Autism

did not evaluate

did not evaluate

9

0.6%
Total

673

33.2%

296

22.1%

* The research grants included in the present study (1999 research grants) included only those that were extramural grants (given to other institutions) and listed as "new" grants by NIMH as of August 2000. The earlier study (1997 research grants) included all existing grants as of 1997, including some intramural grants (done within NIMH). Thus, the total number for the study of 1997 grants is greater than the total number for the study of 1999 grants.

 

Table 2. NIMH Research Grants on Severe Mental Disorders That Target
Clinical, Treatment, or Rehabilitative Aspects of the Disorder

  1997 Research Grants 1999 Research Grants*
 

number

(total = 2,029)

percent

of total

number

(total = 1,342)

percent

of total

Schizophrenia

27

1.3%

35

2.6%
Major depression

94

4.6%

57

4.2%
Manic-depressive illness (bipolar disorder)

17

0.8%

7

0.5%
Obsessive-compulsive disorder

11

0.5%

4

0.3%
Panic disorder

12

0.6%

8

0.6%
Autism

did not evaluate

did not evaluate

1

0.07%
Total

161

7.8%

112

8.3%

* See note for Table 1.

 

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