November 19, 2003
Press Statements of
Sidney M. Wolfe, M.D., 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
Statement of Sidney M. Wolfe, MD, Director, Public Citizen’s Health Research Group
Continuing NIMH Negligence in Funding Sufficient Research on Serious Mental Illness
Unlike people with most other serious, chronic illnesses, people with serious mental illnesses such as schizophrenia or depression are usually diagnosed in their late teens, twenties or soon thereafter. If research and effective, affordable treatment for these illnesses were given a higher priority, a much larger proportion of people with serious mental illnesses could look forward to 40, 50 or 60 or more years of self-fulfilling and happy lives after the initial diagnosis.
Unfortunately, as this report documents, the National Institute of Mental Health has failed to adequately fulfill the major part of its core mission – research on serious mental illness – despite periodic promises to significantly improve. It is not for a want of serious efforts by Dr. Torrey, other individuals and organizations such as the Treatment Advocacy Center.
Dr. Torrey was a Special Assistant to the Director of the National Institute of Mental Health more than 30 years ago, from 1970-1975, and it was there that he began his battle to get NIMH to pay more attention to research questions involving the seriously mentally ill. Dr. Torrey has worked collaboratively with Public Citizen’s Health Research Group since its founding in the early 1970s, including co-authoring our report on mentally ill persons in jails “Criminalizing the Seriously Mentally Ill: The Abuse of Jails as Mental Hospitals,” three studies rating state mental health programs, “Care of the Seriously Mentally Ill: A Rating of the State Programs” and numerous other reports including one of the first studies of homeless shelters for single people showing that a very high percentage of people in such shelters had untreated schizophrenia or other serious mental illnesses. The Jail and state rankings studies were done jointly with the National Alliance for Mental Illness (NAMI) an organization with more than 200,000 members and approximately 1,200 affiliates in all 50 states, including people with serious mental illness, their friends and their families.
One very clear way to distinguish between research involving serious mental illness and behavioral research is to observe the 60 pairs of NIMH rejected (serious mental illness) and funded (largely behavioral) research proposals described in our report from pages 30 to 37. As made clear in our conclusions, it is a disgrace that the U.S. Congress, upon whose appropriations process funding for NIMH depends, has not summoned the courage and determination to force the institute to focus much more strongly and effectively on research directed at the seriously mentally ill.
NIMH Failure to Research Severe Mental Illnesses Both Federal Disgrace and Personal Tragedy
The National Institute of Mental Health (NIMH) is grossly failing in its primary task of researching the causes and treatment of serious mental illnesses. These illnesses, as defined by NIMH’s advisory council, consist of schizophrenia, bipolar disorder, autism, and severe forms of depression, obsessive-compulsive disorder, and panic disorder. The sad truth is that NIMH shows no interest in research on serious mental disorders, instead concentrating on general research on human behavior and basic neuroscience. Much of this research is the responsibility of, and is already being done by, other federal agencies.
In our present study of the 2002 NIMH research awards, we found that only 28.5 percent of all research awards (1,187/4,157) had any relationship to serious mental illnesses. Furthermore, only 5.8 percent (242/4,157) of the awards were clinically relevant to serious mental illnesses, i.e., are likely to improve the treatment or quality of life for individuals currently affected with these diseases. In other words, only 1 out of every 17 research grants currently funded by NIMH is likely to help individuals who now have these diseases.
Equally disturbing is that during the 1997–2002 period in which the NIMH budget doubled from $661 million to $1.3 billion, the proportion of NIMH awards for research on serious mental illnesses decreased. During that period, NIMH rejected many research applications for the study of these illnesses but funded many others unconnected to any mental disorder.
NIMH rejected funding for research on the causes of postpartum depression but funded research on the hearing mechanism of crickets.
NIMH rejected funding for research on why individuals with schizophrenia are unaware of their own illness, and therefore refuse to take medication, but funded research on communication among electric fish.
NIMH rejected funding for research on the side effects of antipsychotic and antidepressant medication in adolescents but funded research on how pigeons think.
NIMH rejected funding for a treatment trial to establish the most effective medication for individuals with a severe form of schizophrenia but funded research on how people in Papua New Guinea think.
The important question is not how people in Papua New Guinea think but how officials at NIMH think. It is known that serious mental illnesses account for 58 percent of the direct care costs of all mental illnesses, yet NIMH allocates just over 28 percent of its research resources to these diseases. It is known that 5.6 million Americans suffer from serious mental illnesses, and that on any given day approximately 250,000 of them are living on the streets or in jail because of their mental illnesses, mostly untreated. It is known that serious mental illnesses cost the federal government alone approximately $45 billion per year and that these costs have been rising at a rate of $2.6 billion per year. From both a humanitarian and an economic point of view, the failure of NIMH to do research on these diseases is irresponsible.
Imagine what the public would say if it was found that fewer than one-third of all research awards from the National Cancer Institute (NCI) were going for research on cancer. And that fewer than 6 percent of the awards – 1 out of 17 – were likely to help anyone who today has cancer. That is the equivalent situation at NIMH today.
NIMH’s failure to do research on serious mental illnesses is not news within NIMH. Last year, in fact, they undertook their own study to document the problem. We requested access to this study under the Freedom of Information Act in May 2003, but to date NIMH has refused to release it. Some preliminary data from this study that NIMH did make public suggest that NIMH’s failure to do research on serious mental illnesses is at least as bad as we are reporting. In recent months, NIMH has implemented a few projects to improve its research portfolio. However meritorious, these efforts are the equivalent of a face-lift for a federal agency in need of a heart transplant.
We ask NIH Director Elias Zerhouni, DHHS Secretary Tommy Thompson, the General Accounting Office, and Congress to investigate this gross failure by NIMH to carry out its primary responsibility. NIMH’s refusal to do an adequate amount of research on serious mental illnesses is not only a waste of taxpayer funds, it is a federal disgrace and a personal tragedy for individuals affected with these diseases.
We Deserve Better: NIMH Denies Hope to Those Most in Need
When the Treatment Advocacy Center (TAC) discovered that nearly three-quarters of NIMH research grants had nothing to do with severe mental illnesses, TAC was compelled to join with Public Citizen to expose this humanitarian and fiscal debacle by releasing A Federal Failure in Psychiatric Research: Continuing NIMH Negligence in Funding Significant Research on Serious Mental Illnesses. It is nothing less than a national tragedy to misallocate public research dollars that should be used to offer hope of better treatment and possibly a cure for severe mental illnesses like schizophrenia and bipolar disorder (manic depression).
The costs of not focusing research dollars on the most severe mental illnesses are astronomical. Total federal spending on treating and supporting people with mental illnesses is now estimated to be $45 billion, and rapidly growing, as it is the federal government that shoulders the lion’s share of the costs through Medicaid, Medicare, Supplemental Security Income, and Social Security Disability Income. As noted in a report recently released by the President’s Commission on Mental Health, “Medicaid is now the largest payer of mental health services in the country.”
Although it is clear that the effect of these severe brain diseases are a tremendous financial drain on the nation’s already struggling budget, NIMH continues to devote only 28.5 percent of its budget to researching severe mental illnesses. As a family member and taxpayer, I am outraged that NIMH funding is so grossly misused.
The humanitarian costs of these illnesses are shocking. At least 130,000 people with severe mental illnesses are homeless and living on the nation’s streets. At any given time, there are more people with untreated severe psychiatric illnesses living on America’s streets than are receiving care in hospitals. A quarter of them regularly eat from garbage cans. They are victimized more often than those who are homeless and do not have a brain disease, and are significantly more likely to have been robbed, beaten, threatened with a weapon or injured. The risk of rape is so high among homeless women with severe mental illnesses that the authors of one study found that “rape and physical battery are normative experiences.”
Faced with this disgrace, NIMH chose to fund research on “Preschool Children’s Understanding of Love” instead of a study of support for individuals recently released from the psychiatric hospital that might reduce the risk of re-hospitalization.
Suicide is the number one cause of premature death among people with schizophrenia, with an estimated 10 percent to 13 percent killing themselves, and it is even more pervasive in people with bipolar disorder, as 15 percent to 17 percent (about one out of seven) take their own lives. The rate in the general population is approximately 1 percent. Yet for six years, NIMH has been funding a study of families coping with change in the Czech Republic.
Just as horrible are the statistics on those with severe mental illnesses who end up incarcerated in our nation’s jails and prisons. The Los Angeles County jail is now the largest psychiatric facility in the United States today, and studies indicate that there are approximately 120,000 seriously mentally ill individuals in the nation’s jails and prisons. Yet NIMH awarded $350,000 to researchers studying courtship behavior among Drosophilia fruit flies.
Through the experiences of my two siblings who have schizophrenia and the thousands of families who have contacted TAC in desperation, I have witnessed the devastating consequences of severe mental illnesses. As a family member and advocate I am all too aware of the limitations in our current understanding of and ability to provide timely and effective treatment of these illnesses. Our hope for the future lies in the research. NIMH cannot be allowed to continue squandering the resources that can make our hopes a reality.
How severe are the most severe mental illnesses?
The authors of A Federal Failure in Psychiatric Research: Continuing NIMH Negligence in Funding Sufficient Research on Serious Mental Illnesses challenge the National Institute of Mental Health to make its foremost priority research of the most severe psychiatric illnesses. Key to assessing that challenge is an appreciation of the degree of severity of the most serious illnesses, like schizophrenia and bipolar disorder.
The Treatment Advocacy Center receives thousands of e-mails each year from the loved ones of those who suffer from the most acute and chronic mental illnesses. The excerpts from four e-mails that follow offer a window into the devastation that can result from these biological illnesses.
From a Mother:
I am the mother of a 34-year-old son who was diagnosed as having paranoid schizophrenia in his late teens. He has been on and off “medications,” in and out of hospitals, and in trouble with police (when off meds.) several times. In January 2002, he had been without meds., for several months, severely “decompensated,” and was hospitalized in Ohio…He was in-hospital, for 2 weeks…and he was released. One week and a day after release, he returned to our home, attacked me, and has been indicted for “attempted murder”…If you are interested in the full story, and can offer assistance, please contact.
From a Daughter:
…I am desperately seeking help for my mother. My mother is severely affected by schizophrenia. I was taken away from my mother at the age of 7 because she was unable to care for me. I am 24 now currently dedicating my life to helping her…My mother had been missing from our family for the past five years. Through a lot of investigation I recently found her living homeless in a shelter …. It took a couple of days of patience to get her to accept the fact that I am her daughter. She suffers from hallucinations, delusions of grandeur, she feels a satellite is always watching her, and I believe that she can definitely be harmful to herself and others. I live [across the country] and I don’t have enough money to immediately get her here. Therefore I call the shelter every day at 6:00 to make sure she is there for the night until I can get her here….I feel helpless, my family has given up on her, but I haven’t. I understand she is not in denial, she is sick. Please help me!!!!!!
From a Father:
Our son…who is 34 years old is suffering from a mental disorder. He shows all the symptoms of schizophrenia. He has a Masters in Physics and up until Feb. of this year, was studying for a Doctorate in Mathematics….Until he left, he had maintained between a 3.5 and 3.9 grade point average…
In Nov. of last year he became convinced that some intelligence service (CIA, FBI, Military) had selected him as a subject to be experimented on. They were using some type of directed energy on him, which caused severe headaches, hearing high pitched noise or whispering when aimed at his head, or muscle control loss when aimed at body parts…He feels that wearing tinfoil wrapped around his head tends to reduce the effect of whatever “THEY” are using on him. These symptoms continue regardless of where he is at. He feels that they are following him or tracking him wherever he goes.
He has been living on the streets…We have been unable to get him to come live with us… I am sending this to you hoping to get some insight or advice on how to handle this.
From a Daughter:
Recently, my mother became homeless. She is 51 years old and lost her home of 25 years due to her suffering from schizophrenia…
About 2 years ago my mom started faxing several family members and friends letters with “conspiracy theory” like accusations. Slowly but surely she had disowned most of her family and all of her friends. She really believed and still does that they (we) are plotting to harm her….
The hardest thing I’ve ever had to do was drop my mom off at a homeless shelter…
It’s been about two months and she is now refusing to stay in any homeless shelters….
The reason I wrote this is because the families dealing with this disease need help. I want to know what I can do to help change the system and make it possible for families like ours to prevent this from happening to them.
There is no reason for my mom to be on the streets and remain suffering from this disease. There has to be a way to make it work.
To these, I will add my own story. Eleven years ago, I stood on a milk crate in the middle of a Manhattan Deli, naked. Secret government agents had chased me through the streets of New York for three straight days and nights. They sought to capture and study me because of my powers, which included reading minds, telepathic control of animals, planting thoughts in others’ minds, and a sort of mind-produced electronic weapon. My special abilities had kept me free, but now I was cornered. Only that plastic milk crate insulated me from the deadly radiation aimed at the deli from the satellite dish across the street. I could not leave that crate. My running was over.
I was consumed by psychosis produced by my bipolar disorder and its psychotic features. I had no idea my sickness had rendered me incapable of understanding that I was sick. To me, it was the world that had gone crazy.
I was lucky. The police took me to a psychiatric facility instead of jail. I was even more fortunate that the available psychiatric medications worked well for me, worked spectacularly well. Since that day in that deli, I have graduated from college and law school, been a practicing attorney and now help those who are as I once was.
But many do not respond as well to current medications and do not have the chance to regain their lives that I did. The challenge to NIMH – to our society – is to give each person with a severe mental illness the opportunity that I had.
As a person living with schizophrenia during the past 37 years, I am very pleased that such a knowledgeable and respected group of outside authorities has produced this careful examination of NIMH research priorities and activities.
Of course, I am most thankful of the progress we have made toward understanding and treating psychotic conditions during my lifetime. But I also realize and appreciate the importance of a report like this which highlights many of the scientific and bureaucratic barriers that continue to be encountered as we struggle to emerge from the recent “dark ages” of psychiatric treatment.