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CATALYST

Selected Articles from Catalyst, Volume 2, Number 5

Refusing to Settle for Pigeon Research

Despite a promise "to continue phasing out questionable or irrelevant research," the National Institute of Mental Health (NIMH) continues to fund as many research grants for the study of pigeons as it funds to study the clinical or treatment aspects of manic-depressive illness. We must refuse to settle for pigeon research when so much rides on NIMH accomplishing its mission to "reduce the burden of mental illness through research."

To that end, on September 6, 2000, the Treatment Advocacy Center released Missions Impossible: The Ongoing Failure of NIMH To Support Sufficient Research on Severe Mental Disorders.1 This report documents that only 22.1 percent of NIMH’s 1999 research grants were related to the most severe disorders. Even more glaringly, only 8.3 percent of the institute’s funding went to the clinical or treatment aspects of these illnesses.

Missions Impossible compares the number of NIMH research grants for schizophrenia, manic-depressive illness, severe depression, and other severe mental disorders with the number of NIMH grants for the study of pigeons, songbirds, fish, and crickets. In addition, the report exposes how NIMH has also lost track of its primary mission through its allocation of substantial research resources to human and social problems that are the responsibility of other government agencies.

A review of 1,349 new research grants funded by NIMH revealed that:

Despite promises by its leaders to rededicate the Institute to its fundamental mission, Missions Impossible finds no increased distribution of NIMH resources to severe mental disorders last year as compared to 1997. It notes that, "Breast cancer, cognitive process of birds, alertness of railway engineers, reading problems, students' transition to middle school, adolescent romantic relationships, daytime sleepiness, how emotion is perceived in music—there are virtually no boundaries to what NIMH is currently funding." The report emphasizes that much of the behavioral and basic neuroscience research being funded by NIMH is worthwhile but should logically be done by the National Science Foundation and other government agencies. NIMH is only able to allocate significant resources to such research by neglecting severe mental disorders.

NIMH's failure to do research on severe mental illnesses is criticized in the report on economic grounds as well. A recent survey reported that severe mental illnesses account for 70 percent of the treatment costs for all mental illnesses and are responsible for 72 percent of all suicides. Federal expenditures for the cost of treatment and support of severe mental illnesses are among the fastest growing items in the federal budget. The report makes five recommendations for improving the NIMH research portfolio:

Missions Impossible is a call to action for those with a vested interest in research into the nature, treatment and prevention of severe mental illness. The AIDS movement would never acquiesce to a similar failure to do AIDS research. Nor would the breast cancer community concede research funds that are so desperately needed. We also must refuse to relent in our demands for vital research. We must keep hope alive. Contact your representatives in Congress. Tell them not to let NIMH go to the birds!

The authors of the report encourage everyone to log onto the NIH web site (www.nih.gov), click on funding and crisp database and examine for yourself the summaries of NIMH-funded research grants. (For more details on accessing the CRISP database, see the box below.)

To view the full report online, visit the Center's web site at or more specifically, /nimhreport/index.htm. For copies of the report, contact the Treatment Advocacy Center at 703-294-6001 or by email to [email protected].

1The report is authored by 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, and Mary T. Zdanowicz, J.D., Executive Director, Treatment Advocacy Center.

ADDITIONAL RESOURCES
reports and materials on pigeon research

What To Do If a Loved One Threatens Suicide
by Sam Bloom

The suicide of a loved one is something we’d like to ignore or forget. Some of us deny it. Others can’t say the word. It is frightening to contemplate. We think it can’t happen to us. It can. Our 23-year-old son, Sammy, killed himself in 1982. He was diagnosed with a serious brain disease 10 months earlier. It has been a very painful experience for our family.

Thirty-one thousand Americans kill themselves every year. Compare this to 17,000 homicides. Suicide is a national problem. It is the ninth leading cause of death in the United States (third among ages 15-24). The U.S. Senate declared it a national problem with the unanimous passage of Senate Resolution 84 in 1997, and the U.S. House of Representatives followed with the almost identical House Resolution 212 in 1998.

Both resolutions called for the development and implementation of a national suicide prevention strategy, and for the availability of accessible and affordable mental health services for all Americans. The Suicide Prevention Advocacy Network (SPAN) is coordinating the efforts to meet these national objectives. SPAN is a country-wide grassroots organization made up largely of persons who survive the suicide of a loved one.

Research shows that 72 percent of suicide victims suffer from severe mental disorders. Long-term, follow-up studies report 10 percent of those with schizophrenia and 15 percent of those with major mood disorders eventually become victims of suicide. Suicide does happen and the loved ones with severe mental illness, as a population class, are at high risk.

Is suicide preventable? Yes. U.S. Surgeon General, David Satcher, MD, has stated so in several speeches and press conferences. What can we do about it? The most important task is to become informed in order to get beyond our fears so that we can act effectively if a crisis arises. We must be knowledgeable about the warning signs that 75 percent of suicidal persons present. We must know where to get help for the person in crisis, and, we need to know what we can do to help.

Warning Signs

  1. Previous suicide threats, gestures, or attempts.
  2. Symptoms of depression.
  3. Changes in eating habits.
  4. Changes in sleeping habits.
  5. Loss of interest or pleasure in formerly enjoyed activities.
  6. Loss of energy.
  7. Feelings of worthlessness or hopelessness.
  8. Lack of concentration, indecision.
  9. Thoughts or speaking about death or suicide.
  10. Use of alcohol or drugs to blunt psychological pain.

Where to Seek Help in a Crisis

  1. Your loved one’s therapist or doctor.
  2. Your loved one’s mental health clinic.
  3. Local psychiatric hospital.
  4. Local general hospital emergency room.
  5. County mental health services.
  6. Encourage your loved one to call the nearest suicide prevention or crisis center for support or call yourself for advice on how to handle the immediate situation.
  7. Seek assistance from other family members, friends, school counselors, teachers, clergy and law enforcement.

What You Can Do

  1. Take all threats, gestures and previous attempts seriously! Make sure your loved one’s professional caregiver also does this!
  2. Be a nonjudgmental listener. Ask what is the matter. Get the person in crisis to talk about his or her problem(s).
  3. If they were in crisis before, ask how they resolved it. Can they apply the same solution now? Discuss what other alternatives there might be.
  4. If professional help is required, help them to find it. You may have to go with them.
  5. Don’t try to "talk" them out of suicide. This only indicates you are not listening. However, let them know you care and have a sense of what they are feeling. Let them know they are not alone. Help them to understand that their problem(s) is temporary and can be solved.
  6. If the crisis is acute, do not leave them alone until help is available. Remove from the area firearms, knives, razors, medications and other potentially dangerous items.
  7. After assistance is obtained, continue to follow up with your loved one’s treatment and progress. Take an active role in ensuring that treatment compliance occurs.

Some suicides occur without warning, but since 75 percent present one or more warning signs, the probabilities are good that with proper and timely intervention one can successfully prevent a suicide. It is important to be knowledgeable about the subject of suicide so we can help our loved ones. Suicide is a national problem and in many cases is preventable. Being informed increases one’s chance of effecting the successful outcome of a crisis. On the other hand, the loss of a loved one is a devastating experience.

For additional information, contact the American Association of Suicidology (AAS), 4201 Connecticut Avenue NW, Washington, DC 20008, 202-237-2280; The American Foundation for Suicide Prevention (AFSP), 120 Wall Street, 2nd Floor, New York, NY 10005, 212-363-3500; your local suicide prevention/crisis center; or Sam Bloom, phone and Fax 310-377-8857.

[Note: Sam Bloom has been a volunteer survivor support group facilitator, crisis line trainer, and member of the speaker’s bureau at the Suicide Prevention Center of the Didi Hirsch Community Mental Health Center, Culver City, California, for the past 15 years. He is also a Southern California Community Organizer for the Suicide Prevention Advocacy Network (SPAN), and is an active member of CAMI, NAMI, AAS, and AFSP.]

ADDITIONAL RESOURCES
1-800-SUICIDE hotline | suicide and people with severe mental illnesses

A Temporary Setback
By Jonathan Stanley, Assistant Director

The 2000 Session of the California State Legislature ended on August 31 and so did the hope of reforming California's antiquated treatment laws this year. On its last day the reform bill that the California Treatment Advocacy Coalition (CTAC) endeavored to make law, Assembly Bill 1800, remained where it had for the long, preceding weeks, deeply buried by Senator Majority Leader John Burton.

We fear for all those overcome by mental illness who will be abandoned to suffer in the upcoming months because AB 1800 was denied the chance of a vote before the Senate. Yet, at the same time, we are also proud, proud of what CTAC's members have accomplished.

Thousands of letters have made impressions on legislators and newspapers. At some point this year, almost every one of the state's lawmakers has had to look a CTAC member in the eye and explain his or her stance on treatment law reform. Organization after organization got behind the bill. For a piece of mental health legislation, the accumulated political weight behind AB 1800 was incredible. Almost every one of California's major newspapers came out for the measure. The two largest publications—the San Francisco Chronicle and the Los Angeles Times—got behind it time and time again. And, letters to the editor and op-eds by CTAC's faithful consistently popped up in papers across the state during the legislative session.

Under the extraordinary guidance of Carla Jacobs and Randall Hagar, CTAC's members strove to change a set of statutes that over the last 30 years have left tens of thousands crippled by mental illness. And CTAC made an impact. The momentum it generated was shown when AB 1800 swept through the Assembly 53-16. Unfortunately, nothing could convince Senator John Burton to permit the vital measure to be considered by the Senators elected to represent the people of California.

Assemblywoman Helen Thomson, AB 1800's author and champion, has already said that she will introduce another reform bill next session. John Burton has promised that something will be done to improve California's treatment laws. We will see how closely his idea of improving the law matches ours. What we do know is that next session CTAC's members will again be heard in the Capitol and throughout California.

ADDITIONAL RESOURCES
updated progress on California legislation

State Updates

Finally, the pendulum is swinging away from suffering and towards treatment. Throughout the nation, numerous bills related to assisted treatment were introduced in state legislatures during the 2000 legislative sessions. The Center tracked over 60 such bills from more than 25 different states. The chart shown in Catalyst, Volume 2 No. 5, pages 4-5, provides examples of the types of bills that states pursued. They include proposals for assisted outpatient treatment, revisions to state treatment standards and improvements to assisted treatment hearing procedures.

As the chart illustrates, several bills were introduced that did not become law. We should be encouraged that legislators were educated and interested enough in assisted treatment to even propose legislation. The truth is, the majority of bills do not become laws. In the 1999 general sessions, for example, only 20% of all the bills introduced in the state legislatures were enacted.1 Given how difficult it is for a bill to become law, we still have some challenges ahead, even if the momentum has shifted towards reform.

Most states have completed their 2000 legislative sessions. Now is the time to prepare for next year. The break between sessions is a good time to network with other reform-minded advocates, contact and visit your elected officials, share your personal frustrations and stories, educate people about anosognosia (lack of insight) and inform decision-makers about the benefits of assisted treatment.

Thanks to your efforts, legislators are recognizing that laws should allow treatment for those who are in need of medical attention and lack the capacity to make rational treatment decisions for themselves. With some dedication, we can help move that pendulum back to a rational center.

1Based on figures presented in THE COUNCIL OF STATE GOVERNMENTS, THE BOOK OF THE STATES 2000-2001, 108-109 (2000). (Note: the percentage of bills introduced that are enacted markedly varies from state to state.)

 

Your Voice – Letter to the Editor

Hi Folks,

I just came across your site in my ongoing self-education about mental health issues, and I wanted to make the following comments:

I've been involved in civic/governmental activism for over 20 years, working primarily to help people understand the importance of getting involved and influencing the decision-making process of the governmental process. One of the many social phenomena I've observed is the extent to which people are resistant to be "public" about their opinions and activities. I have been successful in overcoming that in many of the issues I've promoted, getting the public to attend meetings in numbers sufficient to influence the outcomes.

Recently, I've become involved in mental health issues, particularly those surrounding [people with manic-depression]. The problems associated with sufferers acknowledging they have a problem, them seeking treatment, and their continued "compliance" are topics I hear and discuss frequently.

It isn't clear to me whether your organization has members with actual personal experience with these issues, or whether your organization is simply a legislation advocacy group. Assuming it is the latter, I would like to suggest that the legislation you propose will do more harm than good.

Most people, because of the social stigmas surrounding mental illness, are fearful of seeking treatment, fearful of acknowledging that they have a problem, and fearful of the repercussions a diagnosis of mental illness will have on their jobs and family. Now you propose to add the fear of involuntary treatment. Of involuntary "guardianship". And you openly state that this "involuntary treatment" should be imposed "...BEFORE individuals become a danger to themselves or others." With what you propose, WHY would ANYONE who even suspects they have a mental health problem even SEEK treatment, thus making themselves vulnerable to "involuntary treatment"?

Clear-thinking people with minor problems will be scared away from seeking appropriate treatment, but imagine how your approach would be viewed by the fearful, the deluded, the paranoid? Would the fear of your proposal actually INCREASE violence, as untreated, extremely ill people are approached by either innocent passers-by or civil servants, who are viewed as enforcers of your policies?

Fearful and confused people need reassurance that they will be listened to, that their particular problems will be heard and acted on in a compassionate manner. Any successful hostage negotiator will confirm this. Forcing people into positions that are fixed and undesirable to them creates a "no-win" situation, and they often react with a "nothing-to-lose" approach.

I believe your intentions are well meaning, but appear to be a bit reactive to recent media stories. I have worked with the media on stories for approximately 15 years (some of which aired globally), have written press releases, and organized a number of "media events." I am fully aware the extent to which the public and decision-makers can be swayed by dramatic reconstructions of current events. From my research into this issue, it appears your proposal relies heavily on the emotional and reactionary elements of the publics' fear and misunderstanding of those suffering with mental illness.

It will be a relatively simple effort to interview a number of people whose lives were ruined by their MISDIAGNOSIS, people who lost everything, even the families of people who have died as a result of such "treatment." Dramatic presentations of "Reality" work both ways!

The mentally ill need to be ENCOURAGED to seek treatment, not driven from it by the fear your proposal generates.

Few would argue against forcing those that have demonstrated their violent behaviors [into treatment], but existing laws are ALREADY in place to address that problem.

Given my history of activism, and interest in this issue, I stand ready to prepare a public presentation to be distributed to both the media and appropriate law makers. I would be very interested in your thoughts.

Thanking you in advance,

Tyler

[Note: The following response is from Jonathan Stanley, Assistant Director]

Dear Tyler:

I appreciate you taking your time to develop your thoughts. It was kind of you to share them.

I will, however, respectfully disagree with you. It is not that your concern about some people becoming reluctant to utilize voluntary services if treatment laws are reformed isn't legitimate. It is. Although, I think the extent and quality of that effect is, as of yet, undetermined.

I think our views differ as to the extent of the impact of that effect (if any) relative to the value of rational treatment laws.

Allow me to explain my assessment. I will address the two sides of the scale one at a time.

There is much about the need for treatment law reform and the benefits of doing so on our web site, so I will be brief on that subject. One of the two main reforms we promote is the adoption of a need for treatment standard in those states which allow for treatment only when a person is dangerous. Without such a standard, people who refuse treatment because they are psychotic cannot be helped unless they are dangerous at the time. While I am admittedly now jumping from one scale to the other, there is no fear of alienating such people from treatment because they are already refusing it. Many thousands who do not get help because of such laws end up homeless, in jail, or taking their own lives. I see great value in helping them

The second main objective of our reform effort is to get states to adopt and use assisted outpatient treatment. The substantial majority of the studies available (and there are quite a few) show that this treatment mechanism reduces hospital days, promotes treatment compliance, decreases subsequent admissions, and reduces violence. It also allows some patients to receive treatment in the community rather than an inpatient facility. I see value in doing all those things.

Now, as to the possible detrimental effect on treatment participation caused by legal reform in this area. What you say makes logical sense, but I am still unconvinced that it is true. One problem is that there is a dearth of studies on this. I would like to see more in the future. If you have any such research, I would be very interested in seeing it.

Some of the outpatient commitment studies show that people placed under treatment orders are more likely to maintain treatment once their order expires than people not placed under them. I also know that the Policy Research Associates study of the pilot outpatient commitment program at Bellevue found no significant difference in the level of coercion perceived by those who were in court-ordered treatment and those who were not.

Perhaps more significant is that the changes we seek are in some form in many states. Forty-one states have assisted outpatient treatment. About half have a type of need for treatment standard. We are in touch with hundreds of people all over the country. We have not heard about people in those states shunning treatment because of these progressive laws. Plus, as many of these have now been around for almost two decades, it is surprising that research demonstrating that treatment law reform leads to treatment avoidance has not emerged.

I also know that my own experience is not unique. I refused treatment for almost three years after I was diagnosed as having bipolar disorder, all the while sinking into an increasingly dramatic symptomatic spiral. Due to my behavior I was eventually placed in treatment against my "will." I was given treatment and got better. And because of that, I am now religiously faithful to my treatment. So for me, at least, it was an intervention that made me more likely to seek treatment.

All that information is not enough to come to a definite conclusion, but it is enough so that I am certain that I cannot come to one concerning the effect of treatment laws on voluntary access to treatment. Combine that with the vital benefits of treatment law reform, and you have why I am not in complete agreement with your take on this.

It may interest you that we have other staff and two board members who also have mental illness.

Again, thank you for your comments. I wish you luck in your advocacy efforts.

Jonathan Stanley, Assistant Director

 

The End Game

by Scott J. Mahoney

You turn my port in a storm
Into a profit business
How dare you make a profit
On my mental illness

The end game seems to be
Violence, prison and death
Sometimes baby, baby
I can barely catch my breath
Oh, whatever happened to
Corporal acts of mercy
When judgement time comes
I hope I’m on the jury

You say you want to make me
So strong and independent
When far away distant places
Are the places I can afford rent

Here I am living
In the richest of nations
I can barely afford sometimes
To buy my medication

They’re building prison cells
To the left and the right
Cutting funding for the mentally ill
Say they’re defending our rights

While some lucky few might make it
Most slip through the cracks
Mental illness is a horrible thing
To carry on your back

They say they want consumers
To live in society
Is eating out of garbage cans
Defending our liberty

You try to condemn me
When I self medicate
Like calling me to dinner
Giving me an empty plate

If life had dealt me cancer
I’d be treated with compassion
Since I have mental illness
I’m surrounded with inaction

Side effects do range
From dry mouth to impotence
Living with this day by day
Yeah, in the present tense

Living on the streets
And you say I’ve got rights
Stop and take a look for once
At the quality of life

While so called normal folks
Are living in denial
Life is just a vicious game
Of existence and survival

[Note: Scott Mahoney, who is diagnosed with schizophrenia, is an excellent writer who has contributed previously to Catalyst.]

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