H6c^iAc,> / l^'f^ S. Hrg. 102-1158 THE PROMISE OF MENTAL HEALTH RESEARCH HEARING OF THE COMMITTEE ON LABOR AND HUMAN RESOURCES UNITED STATES SENATE ONE HUNDRED SECOND CONGRESS SECOND SESSION ON EXAMINING MENTAL HEALTH RESEARCH ISSUES, FOCUSING ON THE TREATMENT OF SEVERE AND PERSISTENT MENTAL ILLNESS, AND RE- CENT RELATED REPORTS FROM THE OFFICE OF TECHNOLOGY AS- SESSMENT AND THE NATIONAL ADVISORY MENTAL HEALTH COUNCIL SEPTEMBER 15. 1992 Printed for the use of the Committee onJ^abor and Human Resources U.S. GOVERNMENT PRINTING OFFICE 80-944CC WASHINGlON : 1992 ForsalebytheU.S.GovernmentPrintingOffice SuperintendentofDocuments.CongressionalSalesOffice,Washington,DC 20402 ISBN 0-16-044611-2 COMMITTEE ON LABOR AND HUMAN RESOURCES EDWARD M. E^ENNEDY, Massachusetts, Chairman CLAIBORNE PELL, Rhode Island ORRIN G. HATCH, Utah HOWARD M. METZENBAUM, Ohio NANCY LANDON KASSEBAUM, Kansas CHRISTOPHERJ. DODD, Connecticut JAMES M. JEFFORDS, Vermont PAUL SIMON, IlHnois DAN COATS, Indiana TOM HARKIN, Iowa STROM THURMOND, South Cart^ina BROCKADAMS, Washington DAVE DURENBERGER, Minnesota BARBARA A. MIKULSKI, Maryland THAD COCHRAN, Mississippi JEFF BINGAMAN, New Mexico PAUL D. WELLSTONE, Minnesota Nick Ltitlepield, StaffDirectorand ChiefCounsel Kristine a. Iverson, Minority StaffDirector 01) CONTENTS STATEMENTS Tuesday, September 15,^1992 Wellstone,Hon.PaulD., aV£. Senatorfromthe State ofMinnesota 1 Hatch,Hon. Orrin G., aU3.Senatorfromthe State ofUtah 1 Thurmond,Hon. Strom, aU.S.SenatorfromtheStateofSouth Carolina 3 Durenberger, Hon. Dave, a U.S.—Senator from the State ofMinne—sota, pre- paredstatement ^..^..^^ 4 Simon,Hon.Paul, aU.S. SenatorfrmmtheStateofIllinois ... 5 Steiger, Rod, Malibu, CA; Eleanor Guzzio, Evanston, IL; Rebecca andJessica Viers, Albuquerque,NM; andEileenTrainor,Melrose, MA : 5 Preparedstatements: RodSteiger — 38 EleanorGuzzio „ 43 Rebecca andJessicaViers ™ 49 Kennedy, Hon. Edward—M., a U.S. Senator from the State ofMassadiusetts, preparedstatement 7 Jackson, James S., Associate Dean ofGraduate Studies, University ofMichi- gan, Ann Ari»r, MI; Rita L. HoUings, member, National Advisory Mental Health Council, Charleston, SC; Laura Hall, study director, OfBce ofTech- nology Assessment, UJS. Congress, Washinrton, DC; and Dr. David J. Kupier, chairman. Department ofPsychiatry, Western Psychiatric Institute andCHnic,Pittsburgii,PA 28 Preparedstatements: James S.Jackson 57 Rita L. Hollings 63 LauraHall 70 Dr. DavidJ. Kupfer 72 cm) THE PROMISE OF MENTAL HEALTH RESEARCH TUESDAY, SEPTEMBER 16, 1992 U.S. Senate, Committee on Labor and Human Resources, Washington, DC. The committee met, pursuant to notice, at 11:13 a.m., in room SD-430, Dirksen Senate Office Building, Senator Edward M. Ken- nedy (chairman ofthe committee) presiding. Present: Senators Kennedy, Pell, Simon, Bingaman, Wellstone, Hatch, Thurmond, and Durenberger. Opening Statement of Senator Wellstone Senator Wellstone [presiding]. The Labor and Human Re- sources Committee will come to order. Let me just announce at the beginning that Senator Kennedy will be here shortly; he is still down on the floor. Today, we are going to be focusing on the promise of mental health research, and we will start out with four excellent panelists: Rod Steiger, the —Academy Award-winning actor, who currently lives in—Califomia we thank you very much for being here, Mr. Steiger Eleanor Guzzio, from Chicago, IL; Eileen Trainor, from Melrose, MA, and Rebecca Viers, from Albuquerque, NM. Mrs. Viers is accompanied today by her daughter Jessica. I would like to welcome each of the panelists. We'll start with Mr. Steiger. At this point, I would like to defer to the ranking mi- nority member. Senator Orrin Hatch, from Utah. Opening Statement of Senator Hatch Senator Hatch. Thank you. Senator Wellstone. Senator Kennedy is over on the floor where he is managing S. 2, which is an education bill and a very important one at tnat, so that is why he is having difficulty gettinghere right now. Mr. Chairman, for tar too long, the ravages of mental illness have not been fully appreciated in our society. The hearing todav marks the opportunity to draw the country's attention to the toll on famiUes from these "hidden" disorders. One in five Americans will suffer a mental disorder ranging from minor depression to full blown psychosis in his or her lifetime. Over 2 million individuals in this countiy are currently afflicted by A a persistent or severely disabling mental disorder. good example would be schizophrenia. And nearly 5 percent of Americans will (1) 2 suffer from m^or depression at one time or another during their lives. Today we will hear the real life struggles offour individuals who have the courage, which I want to publicly applaud, to share their stories with our committee, and thus with the world. The hope for these families, as well as for countless millions who suffer, is our Nation's investment in research. Mr. Chairman, we have recently taken a step toward strengthening our research ef- forts with passage oflegislation reauthorizing Federal programs for both treatment and research. The chief focus for these important research endeavors is, of course, the National Institute of Mental Health, under the leadership ofmy good friend, Dr. Fred Goodwin, who I think is without peer in this field and is a great advocate for all ofus. A NIMH reorganization incorporating the into the National Insti- tutes of Health means that the importance of research into the causes and treatment ofmental heallli has been reaffirmed by Con- gress and the Bush administration and made an integral part of our Nation's biomedical research eflfort. Such efforts will help destigmatize mental illness. Such disorders must be examined in the context with other diseases. Reports by the Office of Technology Assessment and the National Advisory Mental Health Council document the continuing stigma attached to mental illness. It is time for all of us Americans to get rid of that stigmatization and to realize that many, many milHons of people suffer at one time or another from these difficulties and that they can be helped. Mr. Chairman, I want to commend our Chairman, Senator Ken- nedy, you, and others on this committee for finding time in the waning moments of the 102nd Congress for today's hearing. The committee's examination ofthis health problem will help us and all Americans to better understand the effects ofmental illness. I am happy to welcome all ofour witnesses this morning and ap- preciate their taking time to be here. I certainly look forwwrd to the testimony ofeach and every one ofyou. The first panel is especially important. We are really looking for- ward to hearing each one ofyour testimonies. I have met you, and I feel very good that you would take the time and have the courage to come here today and talk about these serious problems. Mr. Steiger, I want you to know that I have long looked upon you as one of uie truly greatest actors this country and this world nas ever had, and from all I know, you are a great human being as well. So, for you to come and to be willing to discuss the problems that you suffer and that you were afflicted with, I think is a matter of great courage and great example on your part. There are mil- lions of people who will benefit from the five ofvou testifying here today and the others who will testify. Millions ofpeople will imder- stand that people just like themselves can be afflicted with these problems and that they can get help. So, your testimony is very important. I just want to personally thank each and every one ofyou for beinghere today. Thank you, Mr. Chairman. Senator Wellstone. Thank you. Senator Hatch. 3 We have two panels testifying today. IfI couldjust add one word and then move on to Senator Thurmond, I appreciate what Senator Hatch said. I was at a gathering Saturday night which was in honor of Pete Domenici, held by the National AlHance for Mental Health. The interesting thing about that gathering was that it wasn't just to honor Senator Domenici, but there were probably several thousand people there. And I think what Senator Hatcn said is very important, but of course, we have a long way to eo. I mean, the stigma is there. There is tne funding for research; tnere are fiuso so many people who should not be incarcerated, but they are, and it is because of problems they have with mental illness; there are so many people who are street people, who should not be street people. And unfortimately. all too often when we debate health care poHcy, and we write nealth care legislation, we think that tiie mental health part is the icing on the cake, that it is somehow not really part of health care in this coimtry. And from what we do with national insurance, or any kind of health reform bill, and what we do in terms of insurance regulation or insurance reform, I think this is an area where there is starting to be change. I think people are starting to speak out, I think people are starting to show a lot of courage, and I really believe that we are going to see some great changes, and I really appreciate your being here. Senator Thurmond. Opening Statement of Senator Thurmond Senator Thurmond. Thank you, Mr. Chairman. Mr. Chairman, it is a pleasure to be here this morning to receive testimony on the promise ofmental health research in this country. I wish to also join the chairman in welcoming all the distin- guished witnesses who appear before us today. I know their testi- mony will prove very valuable to the committee. I especially want to take this opportunity to welcome to the com- mittee a fellow South Carolinian, Mrs. Peatsy Hollings, a distin- guished member of the National Advisory Mental Health Council and wife of Senator Hollings. I appreciate the fine work, Mrs. Hol- lings, that you and the other members of the coimcil are doing in bringing attention to various mental health issues in this coimtry. I know the coimcil has worked hard in preparing this report on mental illness in America, and I am sure their fmdings and rec- ommendations will be ofgreat value to the committee. Understanding the causes of mental illness and developing new and better ways to treat such illnesses is very important. It seems that one of the keys to understanding mental illness, like so many other things, is education. Certainly, the testimony received today will be a valuable part ofthis educational process. Mr. Chairman, again, it is a pleasure for me to be here. I have another appointment; I must speak to a military group at 11:30, so ni have to leave in a few minutes, but I will talke care to read this testimony, and I want the witnesses to know I appreciate your coming today. Thank you, Mr. Chairman. SenatorWellstone. Thank you, Senator Thurmond. Well move along with some other quick statements so we can get to the panelists. 4 Senator Durenberger. Opening Statement of Senator Durenberger Senator Durenberger. I will be quick, and I will ask unanimous consent that my statement be made part of the record. I must say publicly that the panelists aren't the only people who are going to be here today. There are literally hundreds of thousands ofAmeri- cans who have been involved in the process that led to the report that is being released. About 500, as I recall, were involved at one time in our nome State ofMinnesota, out in Marshall, MN, which was one of the rural settings where tiie advisory council sought to gather information. What moved me was the wide variety ofpeople whose own particular concerns for mental illness brought them to this small town in the middle ofMinnesota. The stories we heard that day from the Indian reservations of South Dakota to the most remote part of our communities are still with me, as are all ofthe personal experiences we've had. My second observation is that there are a couple ofSenators and Senators' spouses who are involved directly here today and there are many more who are involved in other ways. I don't know that it afflicts us peculiarly, as opposed to other professions, but there is something special about the commitment tliat the members and their famihes have made to dealing with this, which I think is im- portant and, hopefully, will make a big, big difference. Thank you, Mr. Chairman. Senator Wellstone. Thank you. Senator Durenberger, for your veiy sensitive remarks. Your full statement will be included in the record without objection. [The prepared statement ofSenator Durenberger follows:] Prepared Statement of Senator Durenberger Good morning, Mr. Chairman, and good morning, everyone. I remember two and a halfyears ago being in Marshall, MN, to testify before the National Advisory Mental Health Council panel that wrote the report we will hear about today. We talked about tragedies: depression, teen suicide, the stigma that too many still attach to mental illness. What was remarkable was the attendance 300 to 400 people. And this was in a very rural part of western Minnesota, where in early April everybody's mind is on spring planting. It was another reminder to me that mental illness is everywhere. So too is heart disease and cancer, but it's a lot easier to say **My wife has heart failure" than to say "My wife has schizophrenia." There's still so much stigma to mental illness, and it' so unneces- sary, so unfair. How we phrase thin|^ can be so revealing. Instead of saying *^y wife has schizophrenia," many people would say "My wife is schizophrenic"—or manic depressive or compulsive or whatever. It's as if schizophrenia were her essential characteristic. We wouldn't say that aboutheart disease or cancer. The testimony we will hear and the reports we will receive will help break down the ignorance and prejudice that people with men- tal illness face every day. 5 Our first panel of witnesses are brave, selfless people who are willing to share painfiil experiences in the hope that others will learn from them. The second panel comprises authors of reports that emphasize the biological nature ofserious mental illness. We have learned a lot in recent years about the origins and treatment ofmental illness. When we look back at how we treated patients 30 years ago, we're appalled at how much we blamed the victims and their families and at how often the "treatment" amounted to warehousing in mental hospitals. With assistance from people like those testifying today, attitudes will continue to improve and I lust hope it will happen faster in the next 30 years than it has in the last 30 years. Now I look forward to learning from the testimony of our wit- nesses. Thank you. Senator Wellstone. Senator Simon. Opening Statement of Senator Simon Senator Simon. Thank you, Mr. Chairman. I want to thank the panel and everyone who has been participat- ing. I go back to my years when I was a member of the Illinois GenergQ Assembly, when it was a different era, when higher edu- cation was getting all the money they wanted, and we were having a tough time getting money for mental hospitals. I remember the question was asked on the floor of the house why, and halfin jest, halfnot injest, someone responded that the universities have more active alumni associations. One of the things that we need, and why I particularly appre- ciate this panel, is we need people to stand up. Why do we spend less on mental health research relative to every other disabling dis- ease? Well, it is because ifyou or someone in yoiu* family has can- cer, or arthritis or diabetes, we stand up. But there is stifl, unfortu- natelv, a stigma with mental illness, and we don't stand up and de- mand what we should. So I particularly appreciate what the members of this panel are doing, and I am proud to have Eleanor Guzzio from Illinois as one ofthe members ofthe panel. But to all ofyou and to your counter- parts who more and more are standing up, I think that is abso- lutely essential, and I just want to commend you for doing so. Thank you, Mr. Chairman. Senator Wellstone. Thank you. Senator Simon. Mr. Steiger. STATEMENTS OF ROD STEIGER, MALIBU, CA; ELEANOR GUZZIO, EVANSTON, IL; REBECCA AND JESSICA VIERS, AL- BUQUERQUE, NM;AND EILEENTRAINOR, MELROSE, MA Mr. Steiger. Thank you, gentlemen. I am here to try to take you on a little trip through an experi- ence, and I hope you will indulge me. I am very flattered to be here, and I will begin. I want to die. I don't want to move. I have no feeling for move- ment. To be left alone. To disappear. Not to be bothered with wash- ing, shaving, talking, walking or going to the bathroom. Just to get out of this tunnel and the heavy darkness, the cold, the oily, the 6 constantly pressing against my brain, and feeling the way that this scum, grease, tallow, pushes against my sides, crushing you. You, dead-eyed—, gray-facea, unshaven, dirty ofbody, and empty ofmind. Acting oh, what is so important about acting? The paralyzing fear of not remembering a line, projections, images, visions offail- ure. They are watching. They are watching. I can feel them on my bodv. I can feel their eyes all over my skin. And it is time to act. And the crew is watching. Thirty ofthem are watching. The direc- My A tor is watching. partner in the scene is watching. rat in the comer of the studio is watching. And I will not be able to do it. I will not be able to remember. And they are going to discover that I am inadequate, I am unable. I must not scream. I must not scream in front of them. I must stay. I must not, I must not listen to my mind. I must not, I must not run offthe set. I must not run. I must not run. I know Fll break down. Fll break down, and theyll find out I am weak, and they will find out I am in pain. Oh God. What God? I will break down. Fll look like a fool, an idiot, and they'll find out I can't act. I can'—t act. I can't act at all. End of vision but there is a way out. My mind is tell—ing me there is a way out. You get a gun, a nice, cool gun. And then ^wait, now——^you mustn't make a mess. I'm worried. Fm worried about the mess ^the head half go—ne, the blood on the walls, the carpet, the flower, all over the cat and I don't want my loved ones to walk in on that. But there is a way. There is a way. I live by the beach. And they are waiting, the waves, ever moving, relentless ocean. Ill set a small rowboat while my wife is in town doing business, and my dauAter is in Europe, so she won't know until later. Fll row out on the ocean. Fll lower myself over the side of the boat, holding tightly with my righthand to the boat, keeping my head and shoul- ders above the water, holding with my left hand, the gun, pointing toward God's sky. And then fwill lower the gun, Fll take the barrel in my mouth and pull the trigger, and then, I rest. I rest. The boat floats away. My body floats away from it. There is no mess, no mess,just fish—lood. It's strange ^I am more worried about the mess than my life. I rest. I rest. Oh, ve—s, there is a way, there is a way.— My wife, Paula oh, God, my poor wife, Paula who, through 8 years of my twisting, freezing fog, heroically kept my head above the waters ofinsanity, tending me like a crippled child, never criti- cizing, never, never, never in frustration raisingher voice, shouting or screaming with fury that comes with the fear of the unknown. Never has sne tearfully begged or demanded her release or relief saving, "How can you sit there like that? What's wrong with your what kind of a man are you? How can you let yourself look like that?" Never. Always, with the never-ending stretching ofpatience, kindness, motherhood and maternity, she more than gently took care of me. Never, never, never reminde—d me of my illness, my chemical imbalance—chemical imbalance ^isn't that the phrase that the doctors use? And that, Paula, that love, that patience, that preserving shield kept me from suicide one more time. I sit in the squalor ofmyself. Movement is my enemy. I sit, star- ing at the sea, tlie sun. I sit, numb, drowning in self-pity. And