[House Hearing, 109 Congress]
[From the U.S. Government Publishing Office]
MENTAL ILLNESS AND BRAIN DISEASE: DISPELLING
MYTHS AND PROMOTING RECOVERY THROUGH
AWARENESS AND TREATMENT
HEARING
BEFORE THE
SUBCOMMITTEE ON HEALTH
OF THE
COMMITTEE ON ENERGY AND
COMMERCE
HOUSE OF REPRESENTATIVES
ONE HUNDRED NINTH CONGRESS
SECOND SESSION
JUNE 28, 2006
Serial No. 109-120
Printed for the use of the Committee on Energy and Commerce
Available via the World Wide Web: http://www.access.gpo.gov/congress/house
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COMMITTEE ON ENERGY AND COMMERCE
JOE BARTON, Texas, Chairman
RALPH M. HALL, Texas JOHN D. DINGELL, Michigan
MICHAEL BILIRAKIS, Florida Ranking Member
Vice Chairman HENRY A. WAXMAN, California
FRED UPTON, Michigan EDWARD J. MARKEY, Massachusetts
CLIFF STEARNS, Florida RICK BOUCHER, Virginia
PAUL E. GILLMOR, Ohio EDOLPHUS TOWNS, New York
NATHAN DEAL, Georgia FRANK PALLONE, JR., New Jersey
ED WHITFIELD, Kentucky SHERROD BROWN, Ohio
CHARLIE NORWOOD, Georgia BART GORDON, Tennessee
BARBARA CUBIN, Wyoming BOBBY L. RUSH, Illinois
JOHN SHIMKUS, Illinois ANNA G. ESHOO, California
HEATHER WILSON, New Mexico BART STUPAK, Michigan
JOHN B. SHADEGG, Arizona ELIOT L. ENGEL, New York
CHARLES W. "CHIP" PICKERING, Mississippi ALBERT R. WYNN, Maryland
Vice Chairman GENE GREEN, Texas
VITO FOSSELLA, New York TED STRICKLAND, Ohio
ROY BLUNT, Missouri DIANA DEGETTE, Colorado
STEVE BUYER, Indiana LOIS CAPPS, California
GEORGE RADANOVICH, California MIKE DOYLE, Pennsylvania
CHARLES F. BASS, New Hampshire TOM ALLEN, Maine
JOSEPH R. PITTS, Pennsylvania JIM DAVIS, Florida
MARY BONO, California JAN SCHAKOWSKY, Illinois
GREG WALDEN, Oregon HILDA L. SOLIS, California
LEE TERRY, Nebraska CHARLES A. GONZALEZ, Texas
MIKE FERGUSON, New Jersey JAY INSLEE, Washington
MIKE ROGERS, Michigan TAMMY BALDWIN, Wisconsin
C.L. "BUTCH" OTTER, Idaho MIKE ROSS, Arkansas
SUE MYRICK, North Carolina
JOHN SULLIVAN, Oklahoma
TIM MURPHY, Pennsylvania
MICHAEL C. BURGESS, Texas
MARSHA BLACKBURN, Tennessee
BUD ALBRIGHT, Staff Director
DAVID CAVICKE, General Counsel
REID P. F. STUNTZ, Minority Staff Director and Chief Counsel
SUBCOMMITTEE ON HEALTH
NATHAN DEAL, Georgia, Chairman
RALPH M. HALL, Texas SHERROD BROWN, Ohio
MICHAEL BILIRAKIS, Florida Ranking Member
FRED UPTON, Michigan HENRY A. WAXMAN, California
PAUL E. GILLMOR, Ohio EDOLPHUS TOWNS, New York
CHARLIE NORWOOD, Georgia FRANK PALLONE, JR., New Jersey
BARBARA CUBIN, Wyoming BART GORDON, Tennessee
JOHN SHIMKUS, Illinois BOBBY L. RUSH, Illinois
JOHN B. SHADEGG, Arizona ANNA G. ESHOO, California
CHARLES W. "CHIP" PICKERING, Mississippi GENE GREEN, Texas
STEVE BUYER, Indiana TED STRICKLAND, Ohio
JOSEPH R. PITTS, Pennsylvania DIANA DEGETTE, Colorado
MARY BONO, California LOIS CAPPS, California
MIKE FERGUSON, New Jersey TOM ALLEN, Maine
MIKE ROGERS, Michigan JIM DAVIS, Florida
SUE MYRICK, North Carolina TAMMY BALDWIN, Wisconsin
MICHAEL C. BURGESS, Texas JOHN D. DINGELL, Michigan
JOE BARTON, Texas (EX OFFICIO)
(EX OFFICIO)
CONTENTS
Page
Testimony of:
Insel, Dr. Thomas, Director, National Institute of Mental
Health, National Institutes of Health, U.S. Department
of Health and Human Services 21
DePaulo, Dr. Raymond, Director, Department of
Psychiatry and Behavioral Sciences, Johns Hopkins
University School of Medicine 26
Jamison, Dr. Kay, Author and Founder, UCLA Affective
Disorders Clinic 32
Gooding, Dr. Diane C., Associate Professor of
Psychology and Psychiatry, University of Wisconsin 37
Martin, Jennifer L., Attorney, Law Offices of Jennifer L.
Martin 64
Lamphere, Gilbert H., Managing Director, Lamphere
Capital Management 67
Earley, Pete, Writer 71
MENTAL ILLNESS AND BRAIN DISEASE: DISPELLING
MYTHS AND
PROMOTING RECOVERY THROUGH
AWARENESS AND TREATMENT
WEDNESDAY, JUNE 28, 2006
HOUSE OF REPRESENTATIVES,
COMMITTEE ON ENERGY AND COMMERCE,
SUBCOMMITTEE ON HEALTH,
Washington, DC.
The subcommittee met, pursuant to notice, at 10:00 a.m., in
Room 2123 if the Rayburn House Office Building, Hon. Nathan
Deal [Chairman] presiding.
Members present: Representatives Deal, Gillmor, Shimkus,
Shadegg, Pickering, Pitts, Ferguson, Myrick, Burgess, Barton (ex
officio), Pallone, Rush, Eshoo, Capps, Allen, and Baldwin.
Also Present: Representative Murphy.
Staff Present: David Rosenfeld, Chief Counsel; Randy Pate,
Counsel; Ryan Long, Counsel; Brandon Clark, Policy Coordinator;
Chad Grant, Legislative Clerk; John Ford, Minority Counsel; and
Alex Gerlach, Minority Staff Assistant.
MR. DEAL. The subcommittee will come to order and the
Chair recognizes himself for an opening statement. We had
delayed for just a few minutes because we were having technical
difficulty with the server that is our Web cast to the offices. I am
going to take the prerogative of proceeding with the opening
statements because my colleagues I am sure will forgive me for not
having their statements broadcast into everybody's office, but I
hope they will have it finished by the time we get to our first panel.
I am proud to say that today we have two expert panels of
witnesses appearing on the subject of "Mental Health and Brain
Disease: Dispelling Myths and Promoting Recovery Through
Awareness and Treatment." I think that after we hear these two
panels we will have a greater understanding of the issues related to
the treatment for and recovery from severe mental illness.
According to the National Institute of Mental Health, an
estimated 10.4 percent of American adults suffer from bipolar
disorder, major depressive disorder, or schizophrenia in any given
year. These three diseases are included in the list of eight mental
disorders that are clarified as serious mental illness, or SMIs. The
precise cause of these diseases is not clear. Scientists know that
SMIs affect the physical nature of the brain, the structure of the
brain, and have made progress in linking genetic markers to
specific mental illnesses. Like many other serious diseases,
however, the particular factors that cause SMIs are difficult to
determine. It is now accepted that bipolar disorder, major
depression, and schizophrenia are biologically based diseases like
diabetes, autism, and a host of other physical ailments. The
biological nature of these diseases, however, cannot be separated
from environmental factors that may trigger symptoms or enhance
their severity. For example, a recent study showed that if mothers
with major depression were treated successfully, their children
were 11 percent less likely to be diagnosed with depression
themselves. Clearly both genetic and environmental factors play a
role in these disease processes.
But many high profile citizens have spoken publicly about
being diagnosed with these diseases in recent years. Stigma
surrounding mental illness diagnosis and treatment persist. Stigma
can be more or less severe depending on race, sex, ethnicity,
socioeconomic background, and age. Moreover, the social and
economic ramifications of being labeled mentally ill can be
considerable and sometimes devastating.
While SMIs are serious and complex, people who obtain
effective treatment can be productive and successful in spite of
their disease. Treatments available for bipolar disorder,
depression, and schizophrenia are not perfect or foolproof
however. Some have considerable side effects, and it is often
difficult for patients to take recommended medications
consistently. A combination of medication and counseling tends to
be most effective.
According to a 2002 Department of Health and Human
Services report, diagnosable mental illness costs the United States
about $170 billion per year in healthcare expenditures and lost
productivity. The costs of untreated mental illness are staggering,
including homelessness, substance abuse, criminal behavior,
incarceration, unemployment, and suicide. Research conducted at
NIMH indicates that over 90 percent of people who commit
suicide have depression or other diagnosable mental or substance
abuse disorder.
The first panel today will provide an overview of severe mental
illnesses. Dr. Raymond DePaulo will address the burden of mental
illness in the United States. Dr. Thomas Insel will discuss current
research initiatives that demonstrate the biological nature of these
diseases and the effectiveness of current treatments. He will also
provide an outline of the NIMH's mission for future research.
Dr. Kay Redfield Jamison will testify as both a person with
bipolar disorder and as one of the disease's leading experts.
Dr. Jamison will discuss current trends and treatment of bipolar
disorder and major depression as well as the risk associated with
untreated illness. Dr. Diane Gooding will testify about the
biological basis of schizophrenia and highlight effective treatment
strategies.
The second panel will discuss their experiences with seeking
help, diagnosis and treatment. Jennifer Martin is an attorney who
was diagnosed with major depression. Gil Lamphere, Managing
Director for Lamphere Capital Management, also suffers from
depression. Mr. Pete Earley, a local author and former
Washington Post reporter, has a son who has struggled with
bipolar disorder for several years.
Again, I would like to thank all our witnesses for participating
today. I would also like to give a special thanks to Ms. Myrick
from North Carolina, a member of our committee, and her staff,
whose hard work and dedication to helping those suffering from
brain disease has made today's hearing possible.
At this time I would like to ask unanimous consent that all
members are allowed to submit statements and questions for the
record.
Without objection, it is so ordered. I am now pleased to
recognize in the place of our normal Ranking Member a very able
substitute, Ms. Baldwin, for her opening statement.
[The prepared statement of Hon. Nathan Deal follows:]
PREPARED STATEMENT OF THE HON. NATHAN DEAL, CHAIRMAN,
SUBCOMMITTEE ON HEALTH
The Committee will come to order, and the Chair recognizes
himself for an opening statement.
I am proud to say that we have two expert panels of witnesses
appearing before us this morning that will help us examine
issues related to the treatment for and recovery from severe
mental illness.
According to the National Institute of Mental Health, an
estimated 10.4 percent of American adults suffer from bipolar
disorder, major depressive disorder, or schizophrenia in any
given year. These three diseases are included in a list of eight
mental disorders that are classified as serious mental illnesses,
or SMI's.
The precise cause of these diseases is not clear. Scientists
know that SMI's affect the physical structure of the brain and
have made progress in linking genetic markers to specific
mental illnesses.
Like many other serious diseases, however, the particular
factors that cause SMI's are difficult to determine.
It is now accepted that bipolar disorder, major depression,
and schizophrenia are biologically based diseases like diabetes,
autism, and a host of other physical ailments.
The biological nature of these diseases, however, cannot be
separated from environmental factors that may trigger
symptoms or enhance their severity. For example, a recent
study showed that if mothers with major depression were
treated successfully, their children were 11% less likely to be
diagnosed with depression themselves. Clearly, both genetic
and environmental factors play a role in these disease
processes.
Though many high profile citizens have spoken publicly about
being diagnosed with these diseases in recent years, stigma
surrounding mental illness diagnosis and treatment persists.
Stigma can be more or less severe depending on race, sex,
ethnicity, socioeconomic background, and age. Moreover, the
social and economic ramifications of being labeled "mentally
ill" can be considerable and sometimes devastating.
While SMI's are serious and complex, people who obtain
effective treatment can be productive and successful in spite of
their disease. Treatments available for bipolar disorder,
depression, and schizophrenia are not perfect or foolproof,
however. Some have considerable side effects and it is often
difficult for patients to take recommended medications
consistently. A combination of medication and counseling
tends to be most effective.
According to a 2002 Department of Health and Human
Services report, diagnosable mental illness costs the United
States about $170 billion per year in health care expenditures
and lost productivity. The costs of untreated mental illness are
staggering, including homelessness, substance abuse, criminal
behavior, incarceration, unemployment, and suicide. Research
conducted by NIMH indicates that over 90 percent of people
who commit suicide have depression or another diagnosable
mental or substance abuse disorder.
The first panel will provide an overview of severe mental
illnesses. Dr. J. Raymond DePaulo will address the burden of
serious mental illnesses in the U.S.
Dr. Thomas Insel will discuss current research initiatives
that demonstrate the biological nature of these diseases and the
effectiveness of current treatments. He will also provide an
outline of the NIMH's mission for future research.
Dr. Kay Redfield Jamison will testify as both a person with
bipolar disorder and as one of the disease's leading experts.
Dr. Jamison will discuss current trends in diagnosis and
treatment of bipolar disorder and major depression as well as
the risks associated with untreated illness.
Dr. Diane Gooding will testify about the biological basis of
schizophrenia and highlight effective treatment strategies.
The second panel will discuss their experiences with seeking
help, diagnosis, and treatment. Jennifer Martin is an attorney
who was diagnosed with major depression.
Gil Lamphere, managing director of the Lamphere Capital
Management, also suffers from depression. Mr. Pete Earley, a
local author and former Washington Post reporter, has a son
who has struggled with bipolar disorder for several years.
Again, I would like to thank all of our witnesses for
participating today, and I would also like to give a special
thanks to Ms. Myrick from North Carolina and her staff whose
hard work and dedication to helping those suffering from brain
disease has made today's hearing possible.
At this time, I would also like to ask for Unanimous Consent
that all Members be allowed to submit statements and
questions for the record.
I now recognize the Ranking Member of the Subcommittee,
Mr. Brown from Ohio, for five minutes for his opening
statement.
MS. BALDWIN. Thank you, Mr. Chairman, and thank you so
much for holding this very important hearing today.
Part of the purpose of this hearing is to raise awareness about
mental illness and reduce the stigma associated with it, and these
are certainly worthy goals and I know many of my colleagues join
me in sharing them.
It is amazing to me to think that one of the biggest challenges
that continues to face mental health researchers, advocates,
parents, and patients is the belief that mental illness is not a real
illness, and frankly it is sad that this continues to be a commonly
held misconception in the year 2006.
I consider myself lucky because courageous family members,
dear friends and constituents have told me their stories and shared
with me their struggles so that I might understand.
The Alliance for the Mentally Ill, or AMI, which in French
means "friend," was founded in the Congressional district that I
have the honor of representing. This advocacy group has made
amazing strides with regard to public policy change, meanwhile
providing important public education on mental illness as well as
support for families dealing with a new diagnosis.
I am happy that our first panel of witnesses is here to inform
and update us on the exciting and groundbreaking work that is
being done in the arena of mental health research. Mental illnesses
are tangible, treatable health problems just like hypertension or
cancer or heart disease, and I know that the research being done
confirms this every day.
Just as heart disease is a disease of the heart, mental illness is a
disease of the brain, and the more that we can learn about the
origins, symptoms and treatment of mental illness, the more
ammunition we have to fight the myths and stigma that surrounds
mental illness.
While holding this hearing is a promising step, I think that
there are several other steps that we as Members of Congress can
take to promote awareness and reduce stigma.
One is to support adequate funding for the NIH. It is
unacceptable that after a significant commitment that this Congress
has made to doubling the NIH budget, we have allowed that
momentum to disappear by flat funding the NIH in recent years.
In the world of medical research, where the costs of doing research
are continually rising, this flat funding translates into a cut.
In the past few years, funding for qualified grant applications
has fallen to about 20 percent from a high of about 33 percent at
the peak of the doubling in 2001, and I wonder sometimes what
this says to young aspiring researchers.
Similarly unacceptable is this Congress' inability to pass
mental health parity legislation. Mental illness is no different from
physical illnesses. It should be covered by insurance in a
nondiscriminatory manner. And we see this inequity in private
insurance and even in Medicare. It is time to pass mental health
parity.
Lastly, I would like to extend a very warm welcome to my
constituent, Dr. Diane Gooding, Associate Professor of Psychology
and Psychiatry at the University of Wisconsin, Madison.
Dr. Gooding, I am honored you were able to join us and I am very
proud of the groundbreaking research that is conducted at the
University of Wisconsin Madison, and this holds true for the
research that you are doing regarding schizophrenia. Thank you
for joining us and thank you to the rest of our witnesses as well,
especially those who are courageously sharing their personal
stories so that we may learn.
Thank you, Mr. Chairman.
MR. DEAL. Thank you. I am pleased to recognize the
Chairman of the full committee, Mr. Barton from Texas, for an
opening statement.
CHAIRMAN BARTON. Mr. Chairman, I will submit my statement
for the record. I appreciate you doing the hearing and I look
forward to hearing from our witnesses.
[The prepared statement of Hon. Joe Barton follows:]
PREPARED STATEMENT OF THE HON. JOE BARTON, CHAIRMAN,
COMMITTEE ON ENERGY AND COMMERCE
Thank you Chairman Deal for holding this hearing on the
important topic of mental health, also increasingly referred to as
brain disease.
As science advances and as our understanding of the human
body increases, we are coming to a greater awareness of the
infinite intricacies of the human brain. A brain is faster than the
fastest super computer ever built, performing millions of
calculations per second and storing enormous quantities of
information. Our brains are marvelous tools we rely on every
second to navigate through a dangerous world. The brain also
allows us to ponder and ask questions about the universe and our
place in it.
With all the activities the brain coordinates and makes possible
for us, we encounter remarkably few problems. The artificial
intelligence we now use each day may be wizardry, but it's no
match for the brain. Generally speaking, the mind does not
require rebooting, does not freeze up or shut down just as you get
ready to save something. Memories may fade, but they're not
usually deleted.
Sometimes, however, our brains do encounter problems that
interfere with our functioning as human beings. When that
happens, it can be disastrous for the patient, but also for family,
friends, and colleagues.
We are learning more every day about how the brain works and
how to fix it when it breaks, and I want to say a special word of
thanks to Sue Myrick at this point. Sue was the driving force
behind today's hearing. Her family knows what it is to encounter
the problems and the stigma of a disease that is just as destructive
as cancer and disabetes, and I want to applaud her courage and her
determination to bring these issues into the light.
Today we will hear from a distinguished panel of experts about
the biological and environmental causes of common mental
illnesses and learn about the exciting research and treatments that
are becoming available to us.
We are also fortunate to have with us today on our second
panel three people who have experienced mental illness either as a
patient or as a family member. They are here to shed light on their
battles with mental illness as well as on their struggles with its
unfortunate and unfair stigma; more often the result of ignorance
than malice. I look forward to hearing each of their stories today
and thank them for being here.
Thank you again Chairman Deal for holding today's hearing
and welcome to our witnesses.
MR. DEAL. I thank the gentleman. I would then recognize Ms.
Myrick, who is really the leader of this cause and brought this
issue before the subcommittee. Ms. Myrick.
MS. MYRICK. Mr. Chairman, thank you and I really appreciate
this opportunity that you are holding the hearing today and I want
to thank all of you that are here to share with us because you are
what makes it happen as well.
The real goal that I have in mind is, personally today with this
hearing, is to bring mental illness out of the shadows and
emphasize it conceptually, these are really brain diseases,
conditions that are biological, they are diagnosable and they are
treatable. And though the title says mental illness and brain
disease, they are really one and the same.
Monday, after an article appeared in my local paper that we
were going to have this hearing, I was really encouraged because I
was going through the airport and after I got on the plane a lot of
people came up to me and just said, thank you, thank you for doing
this. And what that said to me was this is a bigger problem than
anybody is willing to admit. It really affects a lot of us, and again
those of you who are sharing your personal stories, thank you,
thank you, thank you because the more of that that happens, the
more progress we are going to make.
Today we are going to focus on three diagnoses that fall under
the severe mental illness category: major depression, bipolar
disease, and schizophrenia. These are some of the most serious
mental illnesses, and acknowledging that these diseases exist is
good for our whole society, not just for parents and patients and
the people who deal with it. Awareness provides a clearer path to
treatment and lessens the personal and societal costs of the disease.
You know, all of us on this subcommittee support various
awareness hearings and programs for diabetes, breast cancer,
arthritis, chronic pain, Alzheimer's, everything else. This is just
another one that we need to consider in the same way.
You know, I think about what it was like 20 to 30 years ago
when nobody wanted to say I have cancer. You know it was a
stigma that you just never told anybody. You were afraid to go
forward because you might lose your job or women would say to
me, you know, I might--my husband will leave me. Whatever the
reason, nobody would talk about it.
And when I went public with my breast cancer in 2000, a lot of
close friends and colleagues came up to me and said, I have had
breast cancer. I had known them 20 years and they never told me.
They kept it a secret. And it is really I believe the same thing that
we are dealing with today with brain disease. We are in the same
position. People don't want to talk about it because they are afraid.
Sometimes they think there is no solution to the problem. But
there are ways to live with it, and I hope that will be clear today.
We have a granddaughter who is bipolar, and she first started
suffering with this when she was about 13 years old. It has been a
long road. She is now an adult and, very frankly, the whole family
has lived this story the whole time. And it doesn't affect just the
person. It affects the family. And that is I think the thing that we
forget about. Everybody gets involved. It is not just the patient.
And so, we as a family have spent countless hours, counseling and
trying to get her to accept treatment that you know she will accept,
worrying about her. Those of you who have been through it know
what it is like. But they are life threatening diseases and we don't
realize that.
In 2001, by the way, more Americans killed themselves
through suicide, which is directly related to these diseases in many,
many ways, than died of HIV and AIDS. And when I saw that,
that really hit me hard because we don't consider that the same
thing.
So we need to get to the root of the problem, why are people
committing suicide? It is because there is another problem there
that they are dealing with that hasn't been dealt with themselves.
And so the progress in research to me is so great. I mean there is
no reason for hopelessness with this issue because those of you in
front of us have been doing wonderful work. Other people are
doing wonderful work. And we are finding out more and more
that there are solutions to the problem, that we really can be
hopeful about what can happen.
So I really welcome all of you again. Thank you from the
bottom of my heart for what you do every day, and for those of
who you who are sharing with us, thanks again for being here.
MR. DEAL. I thank the gentlelady. Mr. Pallone is recognized
for an opening statement.
MR. PALLONE. Thank you, Mr. Chairman. I am glad we are
holding today's hearing. Now more than ever we need to be
talking about mental health. Nearly 30 million Americans suffer
from mental health disorders and more than one in five persons
will experience a mental health disorder in their lifetime. Millions
of people suffer from serious, debilitating and life altering mental
illnesses, such as bipolar disorder and schizophrenia, and nearly
every American has a friend or relative that has to cope with such
diseases.
Mr. Chairman, I have to be honest, while I appreciate your
calling today's hearing, the truth of the matter is that for far too
long the Republican led Congress has shirked its responsibility
when it comes to mental health in America. One hearing on
mental health cannot make up for the many years this important
topic has been largely ignored or for the harmful policies that my
Republican friends have enacted over the past few years by cutting
Federal programs that could provide some help. And I recognize
the importance of raising public awareness, but I don't know how
you can talk about treatment and recovery without talking about
access, which I think increasingly is a problem.
Many of the witnesses testifying today will talk about new
research and breakthrough discoveries, yet what good is it if the
research never reaches the patient? Millions of Americans are
unable to access life-saving treatment and therapy because this
committee, and I think the Republican leadership, have not taken
action on the Paul Wellstone Mental Health Parity Act, which my
colleague from Wisconsin mentioned has strong support from both
sides of the aisle, including many members of this committee. So
we should simply move it.
And I think the Republican record on mental health issues or
the problem with the lack of record doesn't stop there. It is one
thing to block important legislation such as the Parity Act that
would undoubtedly improve access to mental health services, but it
is another thing to pass legislation that would further restrict
treatment options, which is exactly what Republicans did when
they gutted Medicaid this year.
Medicaid, as we know, is the single largest source of funding
for mental health care in this country, comprising over half the
State and local spending on mental health services. But that didn't
stop this Congress, again the Republican leadership, from taking
their red pen during last year's reconciliation and slashing billions
from the Medicaid program. As a result millions of low-income
people who suffer from debilitating mental disorders, some of our
most vulnerable citizens, will have to overcome new barriers to
care such as prohibitive cost sharing requirements for medications,
and I have no doubt that their mental health is now in jeopardy.
Again I want to thank the Chairman for holding today's
hearing. Certainly, raising awareness about mental health and
treatment is an important topic, but so is access. And if my
Republican friends are truly interested in improving the current
state of mental health in this country then a good first step would
be addressing the lack of access that most Americans face or many
Americans face when they seek treatment.
Thank you, Mr. Chairman.
MR. DEAL. I now recognize Mr. Ferguson for an opening
statement.
MR. FERGUSON. Thank you, Mr. Chairman. I don't have a
prepared opening statement, but I want to thank you for holding
this hearing. I want to thank Sue Myrick for her leadership on this
issue, and I am pleased to be able to be here to listen to our
witnesses today and to read their testimony because this is a very
difficult and very important issue. There are so many
misunderstandings and a lack of awareness that Ms. Myrick
touched on before that surround mental illness and brain disease.
People don't talk about it very much and Ms. Myrick was referring
to that earlier. And even though people don't talk about it a lot,
and there is this still unfortunately this stigma that surrounds
mental illness, many, many, many families are touched by mental
illness and brain disease and frankly my family is one of them.
Mental illness and brain disease are particularly difficult to
deal with because they are not immediately physically apparent to
others, and it is only through real process of diagnosis and
investigation do they become better known or more apparent. And
because of that, it makes it extremely difficult on a family, on the
loved ones of the person who is affected, and it makes it even more
difficult, frankly, to translate that into more public awareness and
frankly good public policy.
I have been a supporter of the mental health parity efforts here
in the Congress. I have a very, very close friend at home who is a
young person who is struggling with brain cancer right now, that
the brain is so difficult and so complex and it is my hope that
through Sue Myrick's efforts, this committee's efforts, this
Congress' efforts that we will begin to know more and more about
the brain and about how we can conquer the difficulties and the
challenges that we face in treating brain disease and mental illness.
You know, 20 and 30 years ago, people in the healthcare field
talked about the heart and they talked about cancer, and we have
made such incredible progress when it comes to the heart and to
cancers and other previously really vexing diseases and difficulties
and afflictions that human beings deal with. It is really my hope
and belief that this next frontier, the next huge breakthroughs in
human health are going to come with the brain and it is my hope
that through hearings like this, Mr. Chairman, and the efforts of
this Congress that we can continue to further those efforts.
So thank you very much again for holding this hearing, Mr.
Chairman. I appreciate your leadership on this issue and I yield
back.
MR. DEAL. I thank the gentleman. Ms. Eshoo is recognized
for an opening statement.
MS. ESHOO. Thank you, Mr. Chairman, for holding this
hearing and I want to salute our colleague, Congresswoman
Myrick, for being the agitator as it were to make sure that we have
this examination. It is an important hearing for all the reasons that
my colleagues have stated.
All we have to do, as many of my colleagues have said, is just
look within our own circle, our families and our close friends, to
know that this is something that is really relatively common, and
that much progress has been made in terms of research and the
examination of the human brain.
I think that in one of the individual's testimony they used the
following phrase, that this is the treatment of cancer in the 21st
Century--I am just paraphrasing. It wasn't all that many years ago
when the word "cancer" was like an atomic bomb when the word
was stated. There was hopelessness that accompanied the word,
and now the progress that has been made--well we could go on and
on, we could have hearings celebrating the progress. There is a
reason for that, and I think that our committee needs to
reappreciate it. And that is that we made it a top priority in the
country. And when we did, we said that we would invest in the
necessary research in order to advance cures for the disease.
Now there are some cancers we haven't conquered yet. There
are others that are really stoppable and curable. As we did that, we
also recognized that if anyone that was afflicted with cancer did
not have access to what the researchers had brought forward, then
they were condemned to essentially the past. In other words, they
might as well be living without the benefit of the research. And so
today is one of the steps, in my view, along the way because there
is much to do.
We know that there are several of our colleagues battling this
illness, and one of our colleagues talked about this today. Patrick
Kennedy has been very courageous in coming out and talking
about his illness. We know that a President of the United States--
at least one, maybe there were many--Abraham Lincoln suffered
from what I think was what we would now call depression for
different bouts in his life and spent time I think with family or
friends because he needed them not only to help him, but also
probably so that he wouldn't harm himself.
So the history is very rich in terms of experience.
We need to not only hear from the researchers today and those
that have firsthand experience, but I hope what the subcommittee
will do is to take the next step, and that is to see that we have
robust funding for the research, because the breakthroughs will not
be made and we will really all be condemned to the discrimination
and the lack of awareness of the past unless we make the proper
investments. And then the step that comes with that is that there
not be a discriminatory system in terms of access to what the
researchers put out there for all Americans. And when we do that,
we will give hope to humankind because the United States of
America is always first. Always first. We have a great pride in
that and it is justifiable. But it won't happen unless the political
will is really exhibited.
It wasn't that many years ago when Richard Burr was on this
committee, we had legislation that established the National
Institute of Bioimaging and Bioengineering. That was all it was.
We did that because we understood that through the bioimaging
and through the bioengineering that breakthroughs could indeed be
made, but only unless and until we made that investment, which
we did. We were very proud of the work that we did. President
Bush signed that bill into law.
These are all steps in the right direction. The President has
said, I believe it was in 2002, that he favored ending
discriminatory insurance coverage. And so we should not only be
comforted by that, but match his forward thinking on this. It will
take some boldness because there seems to be an attitude around
the Congress that we could take some baby steps, but we can't take
the last full step that will need to be taken.
And this is a bipartisan issue. It is a nonpartisan issue. And
there are many, many Americans, too many Americans that are
still waiting in the wings to have this addressed.
So thank you, Mr. Chairman, thank you to our colleague,
Congresswoman Myrick, and to the researchers, the leaders that
are here as well as those that are going to give testimony, which I
think is very courageous, from their own experience. I look
forward to hearing from you.
MR. DEAL. Thank you. Mr. Shimkus is recognized for an
opening statement.
MR. SHIMKUS. I will yield, Mr. Chairman.
MR. DEAL. Mr. Shadegg is recognized for an opening
statement.
MR. SHADEGG. Thank you, Mr. Chairman. I will make a few
brief remarks. I want to commend you for holding this hearing. I
want to commend my colleague, Ms. Myrick, for drawing our
attention to this topic. It is a topic that affects all of us.
I remember as a young child in Phoenix, Arizona, growing up
both seeing homeless people on the streets and at times going past
the Arizona State asylum for mentally ill and thinking about this
issue.
Obviously it is an issue that concerns us as a society. We as a
Nation I think long ago made a decision that no American should
go without basic healthcare, and for that reason we passed various
laws that ensured that Americans can go, for example, to an
emergency room, and get health care. Many of us, as you know,
Mr. Chairman, are working on legislation that will even improve
upon that system and would provide better coverage for the 44
million or more uninsured Americans who for one reason or
another, largely for many of them it is cost, can't today get health
insurance or afford health insurance. A part of that big puzzle is
the mentally ill.
I worry today with the deinstitutionalization of many mentally
ill which occurred in decades gone by, there are too many
homeless that are affected by mental illness and we are not caring
for them enough. I know it is an issue about which we need to be
concerned and I commend you for holding the hearing.
The specific topic of this discussion today is treatment for and
recovery from severe mental illness. That is very important.
Obviously, a family member can affect the entire family when they
have these kinds of diseases and we need to touch upon them.
In the discussion, however, I would hope that we would look at
the issue of balance. One of my concerns is that mandated health
care coverage runs up the cost of health insurance for everyone,
and I am deeply worried about America's overall competitiveness
in the world, in the business realm because of the cost of health
insurance today.
The President of Intel visited me just toward the end of last
week in my office and his major concern for their competitiveness
worldwide is that the cost of health insurance is going to make
America uncompetitive in the market which means that the market
for building those products will move overseas and America will
lose jobs to countries where the cost of health insurance isn't so
great.
It could well be that rather than directing additional resources
to come out of the insured population maybe these are insurance
where the taxpayers themselves through the National Institutes of
Health or other government organizations should be looking at
funding these costs because of the incredible burden that cost of
healthcare can impose on America's economy in a worldwide, very
competitive economy, where we have to compete with all the
countries around the world. That is an aspect we need to look at.
With that, Mr. Chairman, I yield back.
MR. DEAL. I thank the gentleman. Ms. Capps is recognized
for an opening statement.
MS. CAPPS. Thank you, Mr. Chairman, and I too thank you for
holding this hearing. I salute our colleague, Sue Myrick, for
pulling together an expert panel of witnesses and making this day
happen in the life of our subcommittee and I would be one who
would be in favor of this not being an occasional time to raise
awareness for us. We need that, but we surely could use the
community's NAMI, National Alliance of Mental Illness, and
mental health associations, that we have those groups in our
communities to help us along with our expert witnesses to set some
benchmarks for ourselves in terms of achievable standards and
goals that we really have a responsibility to meet and make this
day worth something.
It is important in itself because it gives us a chance to discuss
issues that are significant, that are life saving, that will have a
positive effect on our economy, that we just need to be doing as a
civilized nation in this world today.
I came to Washington as a spouse in the late 1990s, and
because of that position I was able to avail myself of the last
couple of years of the decade of the brain and to learn about the
breakthroughs and the radical transformations in understanding the
brain and the illnesses and disease conditions that can be affected
by imaging technology, and the National Institute of Mental Health
has really pushed us and opened so many doors for our society that
are now just poised to becoming standards of practice. Again it is
all about who has access to care, in my opinion.
But I was privileged also to be here in the beginning of my
term in Congress when the White House had its first ever, I
believe, conference on mental illness and, Dr. Jamison, that is
when I first heard you and I was struck by many of you--all of you
may have there. I don't know--but the power of people telling
their stories.
And what a long way that goes and some of the outgrowth
from that conference and other effects on destigmatizing and the
multimedia campaign to raise awareness among our young people
in language they could understand and can understand. We have to
keep that momentum going because we have a dual purpose, I
believe, to keep the awareness level but also to make sure that we
see mental health and diseases of the brain as parity, as a part of
health every bit as much as a broken arm or a leg or a situation
requiring insulin if you have diabetes.
We have come a long way with cancer. We need to do the
same thing in this situation, and yet today in 2006 I know because
my brother who lives with bipolar disorder has taught me so much
throughout his adult life on what this means. We still carry
stigmas and we still leave so many people without access to
treatment that could make such a difference in their lives.
So we have our work cut out for us, and one of the areas that is
so significant to me is the determination by many of our insurance
carriers that therapy and comprehensive treatments are not worth
the bottom line and that we can only do short term, we can only do
capped treatments, we can only do quick fixes. And that means we
haven't learned what we need to know about the short-sightedness
of some of this.
Now we need to know that. We do know that mental illness
needs to be treated like other illnesses. Many of you know I was a
school nurse for 20 years. And if a student were to come to my
office with a broken arm, what if I just gave that person a
Band-Aid and sent them back to class? I mean, it is appalling to
think of that, and that is what we are doing with people who
present themselves to those who are professionals and, you know,
X-rays and treatment, but denying patient coverage to
psychotherapy by telling them that their mental health
professionals' recommended course of treatment is unnecessary
and forcing those individuals to cope alone is exactly like putting a
child with a broken limb back into the classroom with a pat on the
back and a Band-Aid.
So we cannot afford to let this go on. We have the ability to set
standards. We have shirked our responsibilities, and that is why
this day and this opportunity that we have with these witnesses
here is important. We need to be listening to what you are going to
be telling us that we need now in this society and this century to
take mental illness more seriously and to bring the issue of parity
to the floor.
I yield back.
MR. DEAL. Mr. Pitts is recognized for an opening statement.
Dr. Burgess is recognized for an opening statement.
MR. BURGESS. Thank you, Mr. Chairman. Actually in the
interest of time I submit for the record and look forward to hearing
from our witnesses.
[The prepared statement of Hon. Michael C. Burgess follows:]
PREPARED STATEMENT OF THE HON. MICHAEL C. BURGESS, A
REPRESENTATIVE IN CONGRESS FROM THE STATE OF TEXAS
I would like to thank Chairman Deal for holding this hearing
on mental health and brain disease.
According to the National Institute of Mental Health (NIMH),
6 percent of Americans ages 18 and older or 1 in 17 adults suffer
from a serious mental illness. Individuals can also be diagnosed
with several disorders at one time.
During this hearing, we will focus on the following illnesses -
major depressive disorder, bipolar disorder, and schizophrenia.
Major depressive disorder and bipolar disorder are mood
disorders. In addition, major depressive disorder is the leading
cause of disability in the United States for people between the ages
of 15 to 44. Next, schizophrenia affects about 2.4 million
American adults. Both men and women have an equal chance of
developing schizophrenia. In consequence, the lives of millions of
Americans are touched by these diseases.
Mental illnesses can be devastating to the affected person as
well as his family. As with every disease, people can become
affected by a mental illness at any time in their lives. These can be
difficult to diagnose and much research is still needed to bring us a
better understanding of the biological basis for these brain
diseases. The brain can now be studied in greater depth, as our
technology improves, such as with functional MRI that can tract
the blood flow associated with different brain activities.
Furthermore, studies on the signaling molecules, such as
neurotransmitters, are leading to discoveries about where they are
located and what they are involved with. Many of these mental
disorders have already been associated with disruptions in normal
brain processes. This knowledge about pathways is crucial to
develop more targeted drugs.
Making a proper diagnosis can be difficult, but it is just the
initial step. The treatment that works best for an individual can
sometimes remain elusive. However, once it is found, these
individuals have a chance to lead fulfilling lives if they continue
their treatments throughout their lifetimes. Two issues that
physicians consider are compliance and the medication side
effects, which are both important factors in the successfulness of
treatments.
I look forward to the testimony from the first panel on the
ongoing research and the direction it is headed. Our discussion
would also not be complete without getting the perspective of
patients and their daily lives with these mental illnesses. The
second panel will bring us some of these insights. Thank you for
being here with us today.
MR. DEAL. Mr. Allen is recognized for an opening statement.
MR. ALLEN. Thank you, Mr. Chairman, for convening this
hearing to examine the progress our Nation has made in identifying
and treating mental illness and brain disease. Mental illness can
have a devastating impact on Americans from all walks of life.
One in five Americans is affected by mental illness.
This hearing can help raise awareness, ease the stigma of
mental illness, and let patients and their families know there is
hope. Since 1996, Congress has been working to pass bipartisan
legislation to ensure that Americans have access to affordable
mental health care.
Though it is not the focus of this hearing, I want to point out
that H.R. 1402, the Paul Wellstone Mental Health Equitable
Treatment Act of 2005, has 227 cosponsors. I hope that our
committee will hold a hearing on that bill later this year.
Lack of access to mental health treatment as a result of
insurance discrimination costs our economy more than $100 billion
each year through absenteeism, turnover and retraining expenses,
lower productivity, and increased medical costs.
There is no scientific or medical basis that justifies insurance
coverage of mental health disorders on different terms and
conditions than other coverage for other illnesses or disorders. The
State of Maine has been a leader in this area by requiring that
insurers provide the same level of coverage for mental health care
as for other illnesses.
We also need to invest more funding in medical research to
diagnose, treat, and find cures. Of great concern to me is the lack
of mental health professionals, particularly in rural areas, and
especially those who treat children with mental illnesses, a major
problem in my home State of Maine.
I look forward to hearing our distinguished panel share their
experience and expertise. Together we need to find ways to build
a comprehensive, efficient system to identify, evaluate, diagnose,
and treat mental illnesses at every stage of life and ensure that all
Americans have access to mental health services.
With that, Mr. Chairman, I yield back.
MR. DEAL. I thank the gentleman. The bell, as you heard, we
have a motion to adjourn on the floor which we will need to go
vote on. But before that, I am going to ask unanimous consent of
the subcommittee that one of the members of our full committee be
allowed to make an opening statement. He is a licensed clinical
child psychologist and that is Mr. Murphy.
Without objection, Mr. Murphy will be recognized for
3 minutes to make an opening statement, and then we will go vote
and return.
MR. MURPHY. I thank the Chairman for this opportunity. We
heard over and over again mental illness is a real and not imagined
problem, as real and devastating to a family as any other medical
illness. It can lead you to lose a job. It can lead you to lose your
family and cost business productivity. In fact it can cost
employees billions and it does cost lives.
And yet, it is more treatable than many other medical
diagnoses. If we ignore it, mental illness can both increase the risk
of heart disease and if mental illness is untreated it can double the
cost of healthcare. Without integrating the care of the body with
the care of the brain, our current system is wasting billions of
dollars.
But the private sector has time and time again demonstrated
that direct healthcare cost savings can save money as well as
productivity. One study reported that when depression
management was included in their health plans productivity
increased over 6 percent and absenteeism declined 28 percent with
a savings of over $2,000 per employee.
When workers with depression receive treatment, medical costs
declined by over $800 per employee. But untreated mental illness
costs about $300 billion, according to the National Institute of
Mental Health. It is $150 billion from lost workdays and
premature death, $70 billion in emergency care and $80 billion
from societal costs such as the justice system. The success in
treatment requires proper and timely treatment and treatment is not
just a matter of medication.
For example, there was a past concern with use of one
antidepressant medication associated with increased adolescent
suicide risk, and it shows you how partial treatment and
misunderstanding of mental illness actually cause harm.
Antidepressant medications change mood but they don't change
your mind. Psychotherapy performed by a qualified practitioner is
also needed to properly treat patients. But when only 25 percent of
antidepressive medications are prescribed by a psychiatrist and
75 percent of the time by a nonpsychiatrist and many cases people
do not receive the additional psychotherapy treatment, then the
prognosis remains low. So when health plans do not cover mental
health treatments, including Medicare, the diseases of mental
illness cannot be treated properly.
Now I urge us to also look at those businesses who have found
great success in providing this care. AT&T, American Airlines,
IBM, and PepsiCo are among those companies who have found
that good mental health care is good for employees and good
economics for the business. The time has come for us to improve
mental health care by integrating and coordinating medical and
mental health services for more effective diagnosis and treatment
rather than just shifting the burden to pay for healthcare or just
calling for more money. Congress can lead the way to save lives
and money through integrated care.
I look forward to working with my colleagues to transform our
health care system, to spend dollars wisely, rather than just spend
dollars.
And I yield back, and I thank the Chairman.
MR. DEAL. Thank the gentleman. Mr. Gillmor, I believe you
indicated you would waive your opening statement. I believe all
members who are here have given their opening statements. So we
will stand in recess pending the completion of the vote. At that
time we will resume with our first panel. Committee will stand in
recess.
[Recess.]
STATEMENTS OF THOMAS INSEL, DIRECTOR, NATIONAL INSTITUTES OF MENTAL HEALTH,
NATIONAL INSTITUTES OF HEALTH, U.S. DEPARTMENT OF HEALTH AND HUMAN
SERVICES; RAYMOND DEPAULO, DIRECTOR, DEPARTMENT OF PSYCHIATRY AND BEHAVIORAL
SCIENCES, JOHNS HOPKINS UNIVERSITY SCHOOL OF MEDICINE; KAY JAMISON, AUTHOR AND
FOUNDER, UCLA AFFECTIVE DISORDERS CLINIC; AND DIANE GOODING, ASSOCIATE PROFESSOR, UNIVERSITY OF WISCONSIN
MR. DEAL. I am pleased to introduce the members of our first
panel.
Dr. Thomas Insel, he is the Director of the National Institute of
Mental Health where he has served in that capacity since 2002;
Dr. J. Raymond DePaulo, recognized as one of the world's
foremost investigators into the genetic basis of affective disorders
such as manic depression, depression, and panic disorder; Dr. Kay
Redfield Jamison, author and founder of the UCLA Affective
Disorders Clinic. Dr. Jamison struggled with bipolar disorder
during her teenage years, successfully completed her Ph.D., and is
now a professor of psychiatry at Johns Hopkins School of
Medicine and Co-Director of the Johns Hopkins Mood Disorders
Center; Dr. Diane Gooding, Associate Professor at the University
of Wisconsin at Madison, and her research focuses on
schizophrenia and schizophrenia spectrum disorders as well as
early detection and prevention measures for mental illness.
We are pleased to have all of you here, and we will start with
Dr. Insel.
Your written testimony is made a part of the record. It will be
available for Members to read. We would ask if you would
summarize during your 5 minutes allotted for your testimony.
DR. INSEL. Thank you, Chairman Deal and Ranking Member
Baldwin, and thanks especially to Congresswoman Myrick for
pulling us all together. I think your leadership here is very
important to everybody.
I will keep my remarks relatively brief given the time. I am
Dr. Tom Insel, Director of the National Institute of Mental Health,
a component of the NIH of the Department of Health and Human
Services that is tasked with the responsibility of developing
improved methods of diagnosing, treating, and preventing mental
disorders, including schizophrenia, autism, and mood and anxiety
disorders.
I am delighted to have an opportunity to be here today. As you
mentioned, my testimony has been submitted for the record, so let
me share with you a few thoughts.
I spent yesterday afternoon at a memorial service for a
23-year-old young man with schizophrenia who killed himself in
our hospital. This was a truly tragic event for a young man with a
tremendous amount of promise. He was from Tucson, Arizona,
and as many other people have done who come from all over the
United States, he came to the NIH Clinical Center to get what is
arguably the best care available in the United States.
This was a fellow who was a creative, tremendously
compassionate young man who had struggled with schizophrenia
since about the age of 19 and had been in and out of various
treatment programs. When he finally came to us, it was with the
hope that he would be able to reach a satisfactory stage of
recovery--everybody was hoping for that.
He spent 6 months in our hospital with intensive treatment,
including a whole range of experimental and available
medications. And 2 days before his discharge, he jumped to his
death. This was, as Ms. Myrick mentioned before, an event that is
sort of like dropping a pebble into a pond because it affects so
many people, not just his family. Whenever there is a suicide,
there are many, many victims. And in this case, it has been a huge
event for the NIH community, particularly for those who worked
with this fellow and the people who cared for him.
At the memorial service yesterday, what I began to think about
was how important it was for us to recognize that, at a time like
this, when we have had such a focus on the need for providing
better access and providing better services and making sure that
young people have the best treatments that are available, we also
need to recognize that for this young man getting the best
treatment at the best place, we still had the worst outcome.
What that says to me is, we are really not where we need to be
yet. We need to do much more to be able to make sure that we
have better treatments for the people who suffer with these very,
very serious diseases.
So I come here really with a very heavy heart as someone who
is responsible for being able to deliver those treatments in order to
make life much better and ensure recovery for those with serious
mental illness.
In all fairness, however, I need to tell you that I also come here
with a lot of hope because I believe in the same heart that we have
now the opportunities that we have never had before.
You heard from your colleagues this morning that there is an
increasing recognition in the decade following the Decade of the
Brain that these are brain disorders, that mental disorders are brain
disorders, a simple and profound truth that has completely altered
the way that we approach diagnosis and ultimately will alter the
way we treat them.
We recognize that these are chronic disorders. But unlike
many other chronic disorders in medicine, these are the chronic
disorders of young people: 50 percent start by age 14; 75 percent
by age 24. This is very different from Alzheimer's disease,
Parkinson's disease and other neurological brain disorders that we
think about. The other difference is that these are brain disorders,
but they are not brain disorders where a focal lesion can be
identified. These are disorders of brain systems.
The good news is that we now have the tools to be able to
understand how brain systems go from being normal to abnormal.
We have the tools of genomics which give us some of the
molecular candidates that we need, and we have the tools of brain
imaging that allow us to look inside the brain. It is no longer a
black box, and we can begin to understand where something has
gone wrong in those that suffer with these disorders. Finally, the
last thing that I would like to say to you, besides the fact that these
are chronic diseases and clearly brain disorders, is that we now
have the ability to study them.
I have submitted for the record a lot more information to back
up those statements, including a set of pictures that I hope you will
take a look at that show where some of those abnormal circuits
appear to be. I will leave those with you. I will not go through the
slides.
But I do want to suggest that we also have a real need to
change the way we think about these illnesses. If you can go to the
second to last slide, what I would like to suggest is where we want
to go as we think about this and the future and why I have such
great hopefulness. We need to go from the point where we are
now, where we diagnose by symptoms and treat by episode, the
way we were with heart disease and cancer 30 years ago, to the
point of understanding the underlying pathophysiology, that is, the
biological mechanisms, of these illnesses, the way we do now for
cancer. That will give us, as indicated on the next slide, both the
biodiagnostics, biomarkers, and the treatments that really do go
after the core pathology.
The goal here is personalized care, just as it is for cancer. And
what I would like to suggest is that we can actually for the first
time envision what prevention would be like if it is strategic and
what we call cure therapeutics.
The bottom line is that the hopefulness comes from having the
tools to be able to do that. We have those tools, and we have been
using them in a very effective way for other brain disorders. We
have been using them for cancer and heart disease. We can do
this. That will be happening over the next 5 years.
Finally, we need to find ways to translate those discoveries to
practice, and that is going to be one of the great challenges we will
face, even when we get the new tools that we currently use. We
will have new discoveries, and that will make a major difference.
I want to thank you again for having us to this subcommittee
hearing. I think that your leadership in this area will be
extraordinarily important for those millions of people who suffer
with these brain disorders. For me, the bottom line is that through
research we do have the opportunity to envision this moment of
hope and we have opportunities that we have never had before in
thinking about how to approach these illnesses. Thank you.
[The prepared statement of Dr. Thomas Insel follows:]
PREPARED STATEMENT OF DR. THOMAS INSEL, DIRECTOR,
NATIONAL INSTITUTE OF MENTAL HEALTH, NATIONAL INSTITUTES
OF HEALTH, U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES
Chairman Deal, Ranking Member Brown, Mrs. Myrick and
members of the Subcommittee: I am Thomas R. Insel, M.D.,
Director of the National Institute of Mental Health (NIMH), the
component of the National Institutes of Health (NIH) of the
Department of Health and Human Service (HHS) tasked with
responsibility for developing improved methods of diagnosing,
treating, and preventing mental disorders, including schizophrenia,
autism, and mood and anxiety disorders. Thank you for giving us
this opportunity to share our excitement about progress in
understanding mental illnesses.
Mental illnesses are brain disorders, with specific symptoms
rooted in abnormal patterns of brain activity; like other medical
disorders, they are diagnosable, and they are treatable. This is
critical, given the tremendous burden mental illnesses exert
personally, socially and economically. Unlike most chronic
medical disorders, mental disorders most often begin in
adolescence and young adulthood. Without proper treatment they
can devastate individuals and their families. Despite this dour
background, there has been significant advancement in the science
of mental illness. We have reliable diagnostic tools and effective
medications and psychological therapies for depression and
anxiety disorders; we have treatments that can predictably reduce
the hallucinations and delusions of schizophrenia, as well as
psychosocial interventions that enable people with disorder to
remain in their communities, to work and lead productive lives.
We referred to the 1990s as the "Decade of the Brain," based
on a Congressional Resolution signed by President George H.W.
Bush on July 17, 1990. It was a period of major growth in
neuroscience, revolutionizing the way we think about the brain.
We were able to demonstrate that mind and body cannot be
separated, that mental activity can be represented as brain activity,
and that a clear distinction cannot be made between mental events
and neural events. One implication of this revolution is the
recognition of mental disorders as brain disorders.
For example, studies of children who have the onset of a rare
form of schizophrenia before age 14 show a marked change in
brain structure. When they were initially seen in the clinic in the
NIMH intramural program at about age eight or nine, they had
already shown some thinning of the part of the brain called the
cerebral cortex, compared to the cortical thickness of other eight-
and nine-year-olds. Scans of their brains over the next five years
demonstrated a profound loss of cerebral cortex relative to the
brain scans of normal children of the same age. This provided
strong evidence that childhood-onset schizophrenia involves loss
of brain matter in a manner similar to other neurological or
neurodegenerative disorders. The difference is that in most
neurological disorders, such as Parkinson's disease, there is a
specific site of damage. But, schizophrenia, bipolar disorder,
depression and autism seem to be disorders of networks, or
circuits, rather than of specific cells identifiable by brain scan.
NEW FINDINGS
Genes and Neuroscience
Since mental disorders are brain disorders, we have been
exploiting the power of genomics and neuroscience to solve the
mysteries of the mind. The Human Genome Project in 2003
provided a full map of the 23,000 genes common to all humans.
The next vital map, which has just become available in the past
few months, comes from the International HapMap Project, whose
goal is to chart all of the common points of variation in the human
genome. This new map of variation should give us the clues for
understanding how one person is susceptible to a mental disorder
and another is resilient. Genetics and neuroscience together give us
the tools for predicting risk, validating diagnosis, and identifying
targets for new, more effective treatments.
Gene-Environment Interactions
We have learned that genes confer susceptibility; but
environmental factors, such as the loss of a loved one, traumatic
events, or physical attributes of the fetal environment, also exert a
powerful influence on the development of mental illness. The
complexity of this interaction is apparent in a serotonin gene that
has been associated with depression. A particular segment of the
gene comes in two forms; people with the "short" form are about
two to three times more likely to get depressed when also faced
with severe life stressors, such as death of a family member or loss
of a job. Conversely, if a person has the other "long" form, they
appear to be protected, even when faced with four or more severe
life stressors. With the protective form, a person is actually no
more likely to develop depression than if he had experienced none
of those events.
Researchers are now asking how environmental factors during
critical phases of development exert long-term effects on how and
when genes are activated. Exploring how genes interact with the
environment to result in a mental disorder such as depression is not
much different from understanding how environmental toxins
contribute to illness. However for mental disorders, the trigger may
be stressful experiences, the exposure may only have an impact at
specific stages of development and the effects may be limited to a
narrow range of cells in the brain.
Brain Systems
With the advent of neuroimaging, we can, for the first time,
look at the activity of brain circuits during illness and map how
activity changes during recovery. Advances in neuroimaging in the
past 5 years have provided more detailed pictures and the ability to
see events almost in real time. For instance, imaging has recently
revealed that a brain region called Area 25 is important in
depression. In depressed people, both volume and metabolic
activity in this region are abnormal. As people recover from
depression, activity in Area 25 undergoes significant changes.
Whether the treatment is an antidepressant medication, behavioral
therapy, or deep brain stimulation, recovery is associated with a
reduction in the activity of this brain circuit.
Clinical trials
In addition to searching for new targets for treatments to help
people in the future, we have been working to use current
treatments more effectively, identifying those who will respond
best to the treatments available now. Over the past seven years,
NIMH has completed several practical clinical trials that are the
largest and longest of their kind, involving more than 10,000
patients at more than 200 sites. These studies were designed to
examine not only changes in symptoms but changes in functioning,
to determine whether a treatment improves quality of life, care
giving burden, or use of health services.
These studies have already demonstrated the effectiveness of
antidepressant medication for adolescents with depression and the
value of an off-patent, inexpensive antipsychotic medication for
adults with chronic schizophrenia. These clinical trials are part of a
rigorous effort to discover what therapies work best, and for
whom. Current research is discovering how individual differences
in biology could determine how that person reacts to a certain
medication. Discovering these individual differences will help
improve and personalize both diagnosis and treatment. For a
person with mental illness, one can imagine that in the future a
physician would perhaps use a memory task together with brain
imaging and a genetics test to diagnose and select a specific
treatment -- just as a contemporary cardiologist uses a stress test
and echocardiogram to diagnose heart disease and select the proper
treatment.
THE FUTURE
It is critical to realize that this vision of personalized care does
not mean designing exotic therapies for a few privileged patients.
The ultimate goal is personalized care for the full spectrum of
people with mental disorders. As researchers learn more about the
brain mechanisms of mental disorders and related behavioral and
environmental factors, treatments will become more specific.
These are some of the issues that will be addressed by the
newest generation of NIMH researchers. In the 60 years of
NIMH's history, there has not been a more exciting time. We are
on the verge of significant advances that will move us closer to
predictive, preventive, and personalized mental health care
grounded in research.
We are also striving to assure that evidence-based practices
can be disseminated and delivered, so that people have access to
treatment and services that are coordinated and effective. We are
working within NIH to better integrate psychiatry with the rest of
medicine, for they are inextricably linked: stress and depression
are major risk factors for heart disease and other serious medical
conditions. The mechanisms underlying these relationships are not
yet clear, but integration will be a significant step toward improved
care of the whole person by an effective treatment team.
I firmly believe we have made a great start in understanding
mental illnesses and that in our lifetimes we will be able to treat
and even prevent mental illnesses with much greater certainty and
speed. This will restore productivity, make families whole, and
eliminate many of the 30,000 suicide deaths each year.
Thank you for providing me the opportunity to discuss these
issues with you. I will be happy to answer any questions you may
have.
MR. DEAL. Thank you.
Dr. DePaulo.
DR. DEPAULO. Chairman Deal, Representative Baldwin,
Representative Myrick, thank you very much for holding these
hearings and thank you for inviting all of us to speak this morning.
I am Ray DePaulo, Professor and Chairman of the Department
of Psychiatry at Johns Hopkins, and I have been lucky enough to
focus my own clinical and research career on bipolar disorder and
depression. And that is what I will focus my remarks on today.
Because of this focus and the ability to do these sorts of things
at a place like Johns Hopkins, I have now had the chance to see
about 10,000 patients with depression and bipolar disorder.
I know from seeing them, but also from the research we have
done on the brain and the genetics research I have participated in,
that these are certainly brain diseases, as certainly as pneumonia
and asthma are lung diseases.
I am also confident that, as Dr. Insel has laid out for you, that
research can illuminate the molecular pathways to these diseases
and that those molecular pathways will provide for us a way to
design better diagnoses, better treatments and attempt prevention.
If I can show my first slide, I want to make a little bit of the
case that depression, if you will, bipolar disorder and we can
certainly say schizophrenia are the cancer of the 21st Century.
Going back to the 1960s when I was a medical student at Johns
Hopkins, I can tell you, cancer was prevalent then, and it is
certainly prevalent today. Both have a rate of somewhere in the
range of 5 to 10 percent. Both of these diseases, as has been said
several times, have great impact on families, not just the patients.
Cancer was stigmatized, and depression still is. In 1960, there
was very little support for research on cancer. It was a mysterious
disorder, and people thought it was hopeless. Today, research on
depression and other psychiatric disorders is still under-supported.
Are they mysterious? Yes. Are they hopeless? Absolutely not.
The cancer treatments in 1960 were not very effective, and
they were very poorly understood. Our treatments for depression
and bipolar disorder and schizophrenia today are fairly effective,
not as effective as we would like and not as good as they should
be, but they are very poorly understood. We don't know why they
work when they work and why they fail when they fail.
Next slide. The World Health Organization has now included
mental illnesses on its list of diseases to study around the world.
They have shown that of the top ten causes of disability
worldwide, five of them are mental disorders. Unipolar or major
depression, that is, major depression is number one on their list.
Alcoholism is number four. Bipolar disorder by itself is number
six. Schizophrenia is number nine, and obsessive-compulsive
disorder is ten. That is a very telling feature. They wouldn't have
seen that if they didn't include these.
The next slide. Another part from their study is to look at the
ten leading causes of social burden in the developed countries, and
again, I apologize that these are not easy to see, but four or five of
these are clearly related to mental health. Unipolar depression
again is number two. Road traffic accidents, which are highly
involved with alcohol and alcoholism, are four and five on that list.
Dementias due to Alzheimer's and other diseases are number eight,
and self-inflicted injuries are number nine on the causes of total
social burden on society.
You have also heard that depression by itself is an independent
risk factor, an important one for heart attacks and for strokes. So
these are medical diseases, and they lead to other medical diseases.
The next slide, some numbers and again hard to read on your
monitor, is that the ultimate cost of these disorders is, as Tom Insel
has said, is suicide.
Actually, what I think is the best population study of suicide
ever done was done in a little town in Sweden where everybody
was interviewed by psychiatrists three times 25 years apart. Over
those 25 years, they kept track of lots of things that happened to
these people, including suicide.
The good news is that 75 percent of the interviews had no
psychiatric diagnosis, but the revealing thing is that suicide rates in
people with any psychiatric disorder were ten times greater than
the population rate. For those with bipolar disorder and
depression, they were 80 times greater.
So this is a dose response curve to show you the impact of
these diseases.
Let me conclude with my last slide and again talk about
depression which I believe is the cancer of the 21st Century. It was
cancer biology, the molecular biology of cancer, and
epidemiology, that is population or public health studies, that
illuminated the genetic and environmental pathways to cancer and
have created logical treatment and prevention strategies for cancer.
The cancer centers, very important, clinical cancer centers have
conducted the largest and best done clinical trials of treatments that
have ever been done in the world anywhere, and I am saying this
because I think this is what our future should be in mental
disorders as well.
Depression biology is human brain biology, and as Dr. Insel
has noted, that is now possible, and it is occurring, and we are in
the early days, but it is occurring. What we need is to take those
tools and turn them into what is called translational research.
Translational research, a term that comes from cancer research by
the way and the war on cancer, means developing new
interventions, new diagnoses, markers, and treatments based on
what we discover in the biology of the disorder. This is really
required.
So what do we need to do that? What we need to do is,
certainly, yes, more research. That will require more funds, but it
requires more than that. We also need more careers devoted to
these disorders, and we need more public education.
I really appreciate both the turnout here but also the statements
that the Members have made that said that public education is a
priority for all of us.
As well, we do depend, because these are diseases, on the
general progress of medical research, both at the level of molecules
and at the level of public health. I want to thank you for the
opportunity to testify today.
[The prepared statement of Dr. Raymond DePaulo follows:]
PREPARED STATEMENT OF DR. RAYMOND DEPAULO, DIRECTOR,
DEPARTMENT OF PSYCHIATRY AND BEHAVIORAL SCIENCES, JOHNS
HOPKINS UNIVERSITY SCHOOL OF MEDICINE
Representative Deal, Ranking Member Brown, Mrs. Myrick
and the Members of the Health Subcommittee: I am Ray DePaulo,
Henry Phipps Professor and Chairman of the Department of
Psychiatry at The Johns Hopkins University School of Medicine.
I'm pleased to be invited here to speak about mental illness and
brain disease. I have spent the last 30 years as a clinician,
research, and teacher at Johns Hopkins focused on Depression and
Bipolar Disorder, which are two of the serious brain diseases
referred to as "mental illnesses". I will describe the prevalence and
costs of these 2 conditions. I will explain why we are convinced
that these are diseases of the brain (as surely as pneumonia and
asthma are diseases of the lungs) and why I am confident that
research will illuminate the molecular and structural pathways to
these brain diseases and lead to much better ways to diagnose, treat
and, in some cases, prevent these disabling diseases.
Major depression and bipolar disorder make up what are called
mood disorders. The most recent estimate is that about 10% of
Americans (and about 5% of adolescents) have had at least one
episode of depression in their lifetime (Kessler et al, 2005). Most
will have multiple episodes of depression and one in 10 of them
will have one or more severe manic episodes. When depressed,
patients experience a low, anxious, or apathetic change in their
mood, inability to enjoy things that normally give them satisfaction
or pleasure, a loss of energy, reduced ability to sustain attention &
concentration, as well as a very negative change in their view of
themselves and of the future. These symptoms, if untreated, last
for several weeks up to a few years and like asthma or epilepsy
once begun, they tend to recur. Most worrisome, patients with
severe depressions often contemplate or attempt suicide. Of those
who complete suicide most have depression and 90% have one or
more diagnosable mental disorders based on information gathered
about them prior to the suicide. Before he served in Congress,
Abraham Lincoln had 2 well-documented periods of depression (or
melancholia as it was called then). During these 2 periods, each
lasting several months, he was taken in by relatives on a farm in
Kentucky where someone was always with him to keep him from
throwing himself into the river. But everyone has moods and some
must be worse than others. Why do we say that clinical forms of
depression, namely major depression and bipolar disorder are brain
diseases? As defined in Webster's dictionary, a disease is a set of
clinical symptoms that are directly attributable to an abnormal
body part (called pathology). The part of the brain that is
malfunctioning in depression is not a single spot but a set of
circuits in the brain in the frontal areas that are known because of
both modern brain imaging methods show this (Mayberg et al ,
2005; Drevets et al, 1997; House et al, 2000) but also from the
known brain lesions of Parkinson's Disease and of stroke. Over
half of patients with Parkinson's disease (which injures the basal
ganglia in the subcortical regions of the frontal lobes) experience
episodes of depression after their Parkinson's disease onsets and in
stroke patients; the likelihood of clinical depression in the
immediate aftermath is related to which area of the brain is injured
by the stroke. Most cases of depression though are not caused by
direct injuries to the brain, but by a combination of genetic and
environmental factors that affect the structure and function of key
circuits in the frontal areas of the brain. In this sense, depression is
like asthma, it's largely genetic in origins but its exacerbations are
usually caused by changes in the environment. For asthma patients
this is often dust or pollen while for depressed patients
psychological stressors are the most frequent environmental
triggers. For asthma patients, when a severe attack occurs,
removal of the dust or pollen is not sufficient therapy; medical
treatment is needed to bring the patient back to normal breathing.
Severe depression it is the same, the patient will need counseling
and medications usually to achieve a remission sufficient to return
to functioning. And longer term treatment between episodes is
needed for many patients with asthma and with depression.
Because we cannot as physicians control the flow of pollen or
psychological stresses (which by themselves are not bad things for
most people) it is important that we find the genes whose
malfunction is ground zero on the pathway to these diseases. In
depression because we don't understand why our medications help
when they do help and why they fail in other cases, we need the
molecular clues that genes can provide to make our treatments
more effective. Genes which are molecules of DNA direct cells to
make particular proteins. The proteins make up the structure of
brain cells, brain pathways and circuits, and when they
malfunction they make the brain vulnerable to stresses which can
set off episodes of psychiatric illnesses such as depression.
Understanding how this works can't help but make us better at
making diagnoses and giving the right treatments to the right
patients. The molecular formulas should tell us much about which
patients will respond to which of today's treatments and which will
not. They should also guide us to create new treatments which
would be "engineered" rationally based on knowledge of what is
wrong in the brain, not just in the emotions or behavior of the
patient.
Depression and bipolar disorders are common diseases like
cancer and like cancer they have many different forms caused by
several different genes and several distinct environmental toxins
acting in combination. Like cancer, therefore, the big
breakthroughs will not be cheap or easy and we can expect
challenges at many steps. The War on Cancer was the right
decision by Congress at the right time (1971) and it has led to a
great deal of progress so that cancer deaths are finally falling and
many forms of cancer are now detected early and cured and even
severe cancers can be managed much better than they were 35
years ago. The key breakthrough that made the war on cancer
possible was the discovery of the genetic code (called codons)
which allowed pathologists who looked at tumors under the
microscope see where the cellular mechanisms went astray, in the
DNA, the RNA, or at the protein level itself. Thus pathologists
and cancer experts could "interrogate" the tumors. However this
technology was not sufficient to allow us to interrogate the living
brain. Now with the genome project largely completed and the
brain imaging methods progressing (and incorporating the imaging
of proteins in the brain) we can now see how we might look into
the mechanisms of depression like we have illuminated so much of
the pathway to various forms of cancer. And as we have done with
cancer patients, we now are much better at predicting which
patients will respond to old treatments (radiation and hormonal
manipulations) and we have also devised many new treatment
strategies (immune therapies and new less toxic chemotherapies)
that we never imagined before the molecular war on cancer was
begun.
This description of depression (and Bipolar disorder) as today's
"cancer" is very appropriate. When I started medical school at
Johns Hopkins in 1968, there were only 4 cancer doctors on the
staff. Cancer was a word that many doctors would not utter to their
patients with cancer for fear of the stigma. Patients who were
admitted with late "metastatic" cancers were often put in the room
farthest from the doctors and nurses, not because the doctors or
nurses didn't like them, but because they didn't know what to say
and they thought there was nothing useful that they could do.
Today, we understand cancer and although it is still a serious and
often fatal condition there is no sense of cancer as a death sentence
or as a stigma on the family whose relative suffers from it. At
Johns Hopkins now there are over 200 cancer doctors and now 3
cancer buildings, reflecting the progress and the optimism we have
about further progress in cancer. It has not been cheap or easy
going. Cancer has not been eradicated and may never be fully
eradicated but no one can deny the progress and the difference it
has made to patients, families, and to society. We understand it so
much better and, therefore, we are continuing to find new ways to
prevent it, to detect it early, to cure it, and to make life meaningful
and substantial as we manage some forms of it now as a chronic
disease rather than as a death sentence.
The World Health Organization global burden of disease study
has demonstrated that depression is the leading cause of disability
world wide and that 5 of the top ten causes of disability are
psychiatric disorders (depression, alcoholism, bipolar disorder,
obsessive compulsive disorder, and schizophrenia). It has
predicted that by 2020 depression will be "the second most
debilitating disease worldwide, after ischemic heart disease, and
one of the leading causes of death, as suicide takes more lives than
traffic accidents, lung disease, or AIDS." Cardiovascular disease
receives the largest amount of government funding, 25 percent;
diabetes gets about 8 percent and cancer a little over 6 percent,
while all mental illnesses (which includes all of the conditions
noted by the W.H.O. and many more) receives only 4 percent.
Of those who suffer from depression year, approximately 74%
(or 7.8 million) of them are in the workforce. This has numerous
implications as far as the potential strength of our economy, should
this group of individuals have access to the mental health care they
require. Furthermore, workers with depression have a much higher
rate of missed days than their healthy counterparts. On average,
depression accounts for a 2.5 fold increase in the probability of
missing work as a result of their illness (Langlieb and Kahn 2005).
In 2000, depression alone was estimated to cost the US economy
$83.1 billion each year , most of it due to absenteeism and
decreased productivity at work (Greenberg et al 2003).
The issue of mental health care is particularly timely as our
nation is in the midst of the War on Terrorism. The primary goal
of terrorism is not simply kill Americans, which can be done only
on a small scale by our adversaries. The goal is to wage
psychological war that will sap our citizen's morale and
confidence in our civilization. Although depression and many
forms of anxiety disorders have strong genetic components they
also have strong environmental triggers. The events of September
11, 2001 created an enormous amount of mental anguish for those
working in and living around the World Trade Center and the
Pentagon. Numerous studies were published soon after these
events describing both civilian and military response to these
unspeakable attacks. Among of the 1008 adults randomly
telephoned who reside near the World Trade Center, "9.7 percent
reported symptoms consistent with current depression" (Galea et al
2002: 982). In a study on civilian and military employees of the
Pentagon, 17.7 percent of respondents reported depressive
symptoms following the attack events of 9/11 (Jordan et al 2004).
This rate is higher when you examine the experiences of military
personnel returning from the war in Iraq. When examined for
mental health following deployment to Iraq, 19.1 percent of those
questioned screened positive for depression (Hoge et al 2006).
These numbers indicate a strong need for mental health care
among those indirectly and directly affected by the events on and
following September 11, 2001. It should be noted, as well, that a
recent article in the New York Times reported an epidemic of
depression and post-traumatic stress disorders in New Orleans
following Hurricane Katrina. This mental health epidemic has lead
to a three-fold increase in the suicide rate from that before the
hurricane (Saulny 2006). Lack of resources in this area is
compounding the problem and greatly taxing local mental health
experts.
The need for research on disorders of mood disorders (and the
other mental disorders as outlined by Dr Insel) is vital for our
troops and to all American citizens. About 15 million people (10
million women and 5 million men) in the United States at any
given time have major depression or some form of manic
depression. The prevalence for depression runs very high, as do
the costs to the individual and the country as a whole. It is
imperative that we invest more time and money towards this
"Cancer of the 21st Century," so that treatments can lead to cures
and hopes into reality.
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MR. DEAL. Thank you.
Dr. Jamison.
DR. JAMISON. Yes, I am delighted to be here. Thank you,
Mr. Chairman. Thank you, Ms. Myrick. Someone called her a
great agitator. She is a great agitator and a wonderful human being
who has been very supportive of mental health causes.
My name is Kay Redfield Jamison, and I am a Professor of
Psychiatry at the Johns Hopkins School of Medicine. My clinical
and research interests lie in the study of mood disorders, especially
bipolar disorder, and in the study and prevention of suicide.
My written testimony includes some basic information about
bipolar disorder, but I am here really to talk about my own
experiences with manic depressive illness and to strongly advocate
for increased research funding.
Although we know much more about this illness than even 5
years ago, thanks in significant measure to the excellent research
efforts of NIMH, there is far too much we do not know. Only an
aggressive and concerted effort to study the underlying causes of
bipolar illness, particularly genetics, will result in earlier and more
accurate diagnosis and better treatment.
But I would like to speak now at a more personal level. Like
most people, I had absolutely no reason to expect that I would
become so seriously, so terribly mentally ill. I certainly had no
preparation for insanity. No one does. I came from a military and
very traditional family, and although I have a very extensive
family history of bipolar illness, nobody in my family talked about
it.
I had a healthy, active, and very happy childhood and
adolescence. I loved school and did well at it. I loved sports, was
a school leader and captain of all my teams. Then in my senior
year of high school, after a period of much, much, much
enthusiasm and not much sleep, I became deeply depressed,
suicidal, and psychotic. I had never thought of suicide or death
before, and now I thought of little else. For much of each day,
during several months of my senior year in high school, I thought
about when, whether, and how to kill myself.
Over the years, my manic-depressive illness became much,
much worse, and the reality of dying young from suicide became a
dangerous undertow in my dealings with life. Then when I was 28
years old, after a particularly damaging and psychotic mania
followed in turn by a particularly prolonged and violent siege of
depression, I took a massive and, because I was a lithium
researcher, what I knew to be a lethal overdose of lithium. I
unambivalently wanted to die. I nearly did die. I was in a coma
for many days.
Yet I have been fortunate. My illness responds very well to
lithium, and I have been well for more than 20 years. I have had
the best medical care available. I have had access to that care, and
I have been able to afford to pay for that care. Most people cannot.
My family, friends, and colleagues have been surpassingly
supportive. Most people are not so lucky. I would like to end with
a few beliefs and a few concerns.
As a clinician, I believe there are treatments that can and do
save lives. As one surrounded by scientists whose explorations of
the brain are eloquent and profound, I believe that our basic
understanding of the brain's biology is radically changing how we
think about both mental illness and suicide. As a teacher of young
doctors and graduate students, I feel the future holds great promise
for the intelligent and compassionate care of the seriously mentally
ill.
Still, the effort to develop new treatments for severe mental
illness and to prevent suicide seem to me to be remarkably
unhurried. Every 17 minutes in America, someone commits
suicide. Where is the public outrage? Where is the public
concern? I have become more impatient in recent years, and I
didn't start off particularly patient, and I am more acutely aware of
the problems that stand in the way of denting the death count. I
cannot rid my mind of the desolation, confusion, and guilt I have
seen in the parents, children, friends, and colleagues of those who
kill themselves. Nor can I shut out the images of the autopsy
photos I have seen of 12-year-old children or the prom
photographs of teenagers who will within a year's time put a pistol
in their mouths or jump from the top floor of a university
dormitory building.
Looking at suicide, the sheer numbers, the pain leading up to it,
and the suffering left behind, is harrowing. For every moment of
education and exhilaration in the science or in the success of
governments, there is the matching and terrible reality of the
deaths themselves: the young deaths, the violent deaths, the
terribly unnecessary deaths.
Like many of my colleagues who study mental illness and
suicide, I have seen time and again the limitations of our science. I
have been privileged to see how good some doctors are and
dismayed by the incompetence of others. Mostly, I have been
impressed by how little value our society puts upon saving the
lives of those who are in such despair as to want to end them.
It is a societal illusion that suicide is rare. It is not rare.
Certainly the mental illnesses most closely tied to suicide are not
rare. They are common conditions. And unlike cancer and heart
disease, they disproportionately affect and kill the young. The tens
of millions of Americans who suffer from mental illness deserve
compassion and good science. The diseases from which they
suffer deserve to be given the kind of research funding
commensurate with the pain and death they cause. In short, they
deserve action.
Thank you.
[The prepared statement of Dr. Kay Jamison follows:]
PREPARED STATEMENT OF DR. KAY JAMISON, AUTHOR AND
FOUNDER, UCLA AFFECTIVE DISORDERS CLINIC
Good morning. My name is Kay Redfield Jamison and I am a
professor of psychiatry at the Johns Hopkins School of Medicine
and co-director of the Johns Hopkins Mood Disorders Center. I
received my Ph.D. from the University of California, Los Angeles
in clinical psychology, with a specialization in
psychopharmacology. My clinical research interests lie in the
study and treatment of mood disorders � depression and bipolar
disorder�and in the study and prevention of suicide. I have also
studied creativity and literature and have an appointment as
Honorary Professor of English at the University of St. Andrews in
Scotland. I am here today to speak about my own experiences
with manic-depressive illness, also called bipolar disorder, and to
strongly advocate for increased research funding for psychiatric
illnesses. Before turning to my own experiences, I would like to
give a very brief overview of what we know about bipolar
disorder.
Manic-depression, or bipolar disorder, is a painful, common,
and potentially lethal disorder of mood, thinking, energy, and
sleep. It ranges tremendously in severity, from relatively mild
expressions to extremely severe, life-threatening and psychotic
forms of the illness. The depressive phase - like depression itself
- is characterized by a profound lack of energy, apathy,
hopelessness, sleeping far too much or far too little, difficulties in
thinking, and a loss of pleasure in life. Suicidal and morbid
thoughts, as well as undue guilt, are common.
The manic phase is characterized by symptoms in many ways
the opposite of those seen in depression. Mood is elevated and
expansive, or paranoid and irritable; activity and energy levels are
greatly increased; the need for sleep is decreased; speech is fast
and excitable, and thinking is very rapid. Other common features
of mania are spending large amounts of money, impulsive
involvement in questionable endeavors, impatience, and volatility.
In its extreme forms mania is characterized by violent agitation,
bizarre behavior, delusional thinking, and hallucinations.
What, briefly, do we know about the causes, correlates, and
treatment of bipolar illness? First, we know it is genetic. It runs in
families. The scientific evidence that bipolar disorder is biological
is indisputable. We also know also that the illness is potentially
lethal. The mortality rate is very high. The suicide rate in
untreated, severe bipolar illness is 10-15%; 25-50% of people
with the disorder will attempt suicide at least once. It has been
estimated that at least 70% of the adolescents who commit suicide
suffered from a potentially treatable, major mood disorder.
Bipolar illness, like virtually all of the major psychiatric
disorders, is an illness of youth; that is, the illness most frequently
first occurs in late adolescence or the early twenties. The average
age of onset is about 18 years. Men and women are equally liable
to bipolar disorder, and alcohol and drug abuse are common. The
illness is recurrent and, if not treated, is often progressive; that is, it
will tend to worsen over time. About one percent of the population
will develop the more severe form of bipolar illness; perhaps two
to three percent will have milder forms.
Finally, and most important, bipolar illness is treatable. Most
patients will respond to lithium, anticonvulsants, or a combination
of anticonvulsants, lithium, and antipsychotic medications.
Unfortunately, and unfairly, many people do not have access to
good medical care, nor can they afford to pay for the medications
that have been prescribed for them.
Although we know much more about this illness than we did
even five years ago - thanks in significant measure to the
excellent research efforts of the National Institute of Mental
Health-there is far too much we do not know. Only an
aggressive and concerted effort to study the underlying causes of
bipolar illness will result in earlier and more accurate diagnosis
and better, less problematic treatments.
I would like to speak now at a more personal level. Like most
people, I had no reason to expect that I would become so seriously,
so terribly mentally ill. I certainly had no preparation for insanity.
I came from a military and traditional family and, although I had a
very extensive family history of bipolar illness, no one talked
about it. I had a healthy, active, and very happy childhood and
adolescence. I loved school and did well at it, loved sports, was a
school leader, and captain of all of my teams.
Then, in my senior year of high school, after a period of much
enthusiasm and not much sleep, I became deeply depressed,
suicidal, and psychotic. I had never thought of suicide before; now
I thought of little else. For much of each day during several
months of my senior year in high school, I thought about when,
whether, where, and how to kill myself. I learned to present to
others a face at variance with my mind; ferreted out the location of
two or three nearby tall buildings with unprotected stairwells;
discovered the fastest flows of morning traffic; and learned how to
load my father's gun.
The rest of my life at the time - sports, classes, writing,
friends, planning for college - fell fast into a black night.
Everything seemed a ridiculous charade to endure; a hollow
existence to fake one's way through as best one could. But,
gradually, layer by layer, the depression lifted, and, by the time my
senior prom and graduation came around, I had been well for
months. Suicide had withdrawn to the back squares of the board
and become, once again, simply unthinkable.
Over the years, my manic-depressive illness became much,
much worse, and the reality of dying young from suicide became a
dangerous undertow in my dealings with life. Then, when I was
twenty-eight years old, after a particularly damaging and psychotic
mania, followed, in turn, by a particularly prolonged and violent
siege of depression, I took a massive, and what I knew to be a
lethal overdose of lithium. I unambivalently wanted to die, and
nearly did. Death from suicide had become a possibility, if not
probability, in my life.
Yet I have been fortunate. My illness responds very well to
lithium and I have been well for more than twenty years. I have
had the best medical care available and I have been able to afford
to pay for it. My family, friends and colleagues have been
surpassingly supportive; most people are not so lucky.
I would like to end with a few beliefs and concerns. As a
clinician, I believe there are treatments that can save lives; as one
surrounded by scientists whose explorations of the brain are
elegant and profound, I believe that our basic understanding of the
brain's biology is radically changing how we think about both
mental illness and suicide; and, as a teacher of young doctors and
graduate students, I feel the future holds out great promise for the
intelligent and compassionate care of the seriously mentally ill.
Still, the effort to develop new treatments for severe mental
illness and to prevent suicide seems remarkably unhurried. Every
seventeen minutes in America, someone commits suicide. Where
is the public concern and outrage? I have become more impatient
in recent years, and am more acutely aware of the problems that
stand in the way of denting the death count. I cannot rid my mind
of the desolation, confusion, and guilt I have seen in the parents,
children, friends, and colleagues of those who kill themselves. Nor
can I shut out the images of the autopsy photographs of twelve-
year-old children, or the prom photographs of adolescents who
within a year's time will put a pistol in their mouths or jump from
the top floor of a university dormitory building. Looking at suicide
- the sheer numbers, the pain leading up to it, and the suffering
left behind - is harrowing. For every moment of celebration for
the science, or in the success of governments, there is a matching
and terrible reality of the deaths themselves: the young deaths, the
violent deaths, the unnecessary deaths.
Like many of my colleagues who study mental illness and
suicide, I have seen time and again the limitations of our science,
been privileged to see how good some doctors are, and dismayed
by the incompetence of others. Mostly, I have been impressed by
how little value our society puts upon saving the lives of those who
are in such despair as to want to end them. It is a societal illusion
that suicide is rare. It is not. Certainly the mental illnesses most
closely tied to suicide are not rare. They are common conditions,
and, unlike cancer and heart disease, they disproportionately affect
and kill the young.
The tens of millions of Americans who suffer from mental illness
deserve compassion and good science. The diseases from which
they suffer deserve to be given the kind of research funding
commensurate with the pain and death they cause. In short, they
deserve action.
Attachment: Biographical sketch
Kay Redfield Jamison
Kay Redfield Jamison is Professor of Psychiatry at the Johns
Hopkins University School of Medicine and co-director of the
Johns Hopkins Mood Disorders Center. She is also Honorary
Professor of English at the University of St. Andrews in Scotland.
She is the coauthor of the standard medical text on manic-
depressive illness, which was chosen in 1990 as the Most
Outstanding Book in Biomedical Sciences by the American
Association of Publishers, and author of Touched with Fire, An
Unquiet Mind, Night Falls Fast, and Exuberance. Her memoir
about her experiences with manic-depressive illness, An Unquiet
Mind, was cited by several major publications as one of the best
books of 1995. An Unquiet Mind was on The New York Times
Bestseller List for more than five months and translated into
twenty languages. Night Falls Fast: Understanding Suicide was a
national bestseller, translated into fifteen languages, and selected
by The New York Times as a Notable Book of 1999. Her most
recent book, Exuberance: The Passion for Life, was selected by
The Washington Post, The Seattle Times, and The San Francisco
Chronicle as one of the best books of 2004 and by Discover
magazine as one of the best science books of the year.
Dr. Jamison did her undergraduate and doctoral studies at the
University of California, Los Angeles where she was a National
Science Foundation Research Fellow, University of California
Cook Scholar, John F. Kennedy Scholar, United States Public
Health Service Pre-doctoral Research Fellow, and UCLA Graduate
Woman of the Year. She also studied zoology and
neurophysiology at the University of St. Andrews in Scotland.
Dr. Jamison, formerly the director of the UCLA Affective
Disorders Clinic, was selected as UCLA Woman of Science and
has been cited as one of the "Best Doctors in the United States".
She is recipient of the American Suicide Foundation Research
Award, the UCLA Distinguished Alumnus Award, the UCLA
Award for Creative Excellence, the Siena Medal, the Endowment
Award from the Massachusetts General Hospital/Harvard Medical
School, the Fawcett Humanitarian Award from the National
Depressive and Manic-Depressive Association, the Steven V.
Logan Award for Research into Brain Disorders from the National
Alliance for the Mentally Ill, the William Styron Award from the
National Mental Health Association, the Falcone Prize for
Research in Affective Illness from the National Alliance for
Research on Schizophrenia and Depression, and the Yale
University McGovern Award for excellence in medical
communication. She has been awarded numerous honorary
degrees, selected as one of five individuals for the public television
series "Great Minds of Medicine", and chosen by Time magazine
as a "Hero of Medicine". She was Distinguished Lecturer at
Harvard University in 2002 and the Litchfield Lecturer at the
University of Oxford in 2003. She is the recipient of a MacArthur
Award.
Dr. Jamison was a member of the first National Advisory
Council for Human Genome Research. She is Senior Scientific
Consultant to the Dana Foundation and Chair of the Genome
Action Coalition, an alliance of more than 140 patient groups,
pharmaceutical corporations, and biotechnology companies. She
also serves on the National Committee for Basic Sciences at
UCLA and is the executive producer and writer for a series of
award-winning public television specials about manic-depressive
illness and the arts.
MR. DEAL. Unfortunately, those bells mean we have another
vote on the floor. People are playing games this morning. We
have a motion that the committee rise that we have to go vote on.
Dr. Gooding, rather than try to hurry your testimony, we will
go vote and come back and resume with your testimony after we
return.
[Recess.]
MR. DEAL. The hearing will reconvene.
Dr. Gooding.
DR. GOODING. Thank you. Good morning, Chairman Deal
and members of the subcommittee.
My name is Diane Gooding, Associate Professor of
Psychology and Psychiatry at the University of Wisconsin,
Madison.
My primary areas of research are identifying and validating
indicators of heightened risk for schizophrenia and then identifying
and studying at-risk individuals. While summarizing current
schizophrenia research, I would like to illustrate the ways in which
focusing on genetic markers at risk for schizophrenia can help us
to better understand and combat this devastating mental disorder.
Although there are currently some palliative treatments for
schizophrenia, the specific biological mechanisms underlying the
disorder are currently unknown, and the goals of schizophrenia
research are focused on identifying the pathophysiology and
etiology of the disorder and eventually preventing the disorder.
Contrary to earlier notions about schizophrenia, it is not due to
bad parenting or personal failure. Schizophrenia is an equal
opportunity disorder. It affects people of all socioeconomic
groups, ethnicities, and races.
The typical age of risk is between late adolescence and early
adulthood, and the consensus right now is that schizophrenia is a
genetically mediated neurodevelopmental disease. We know that
genes are necessary but not sufficient for the development of
schizophrenia.
As a group, people with schizophrenia differ from healthy
people in terms of their neurocognitive performance. People with
schizophrenia show impairments in terms of executive functioning.
For example, attention, inhibition, response planning, different
types of memory, eye movements, information processing, and
sensory gating.
We know that some of these neurocognitive impairments have
the following characteristics: The ones that we see in
schizophrenia in disproportionate numbers are relatively rare in the
general population. They are heritable, and they are stable over
time.
In the schizophrenia patients, these abnormalities are present
during acute episodes as well as during symptom remission, and
they are independent of medication status and chronicity. Also,
these same abnormalities are present in higher proportions of the
clinically unaffected biological relatives of the patients.
When neurocognitive impairments have all of these
characteristics, we consider them to be markers of a genetic
liability for schizophrenia, and we call markers of genetic liability
endophenotypes.
It is really exciting right now in research because we are
making a lot of progress in terms of identifying such
endophenotypes. Examples would be eye-tracking abnormalities,
working memory impairments, and sensory gating deficits.
Why would we want to study these? What are the advantages?
Because these endophenotypes, these markers of genetic risk, are
closer in the etiologic chain than symptoms, these markers can be
an invaluable aid in the genetic dissection of the disorder.
Currently, we know that genes are involved, but we don't know
which genes are involved, how many genes need to be present, and
how they affect brain development.
We also know that not everyone at heightened risk for
schizophrenia goes on to manifest the disorder, so we can study
endophenotypes to identify those individuals of heightened risk
and study them over time, follow them to try to figure out why
among the vulnerable individuals some of them succumb to the
disorder and others are spared.
Moreover, we can use the study of endophenotypes to
investigate whether certain indicators that have predictive validity
at the population level also have predictive validity at the
individual level.
We know that palliative treatment of schizophrenia can lead to
considerable improvements in terms of quality of life, ability to
live and work in the community, and studies indicate that the
shorter the duration of untreated psychosis, the better the chances
for more positive outcome.
Currently, there are research projects that attempt to intervene
with individuals who show schizophrenia-like functional deficits
early on but have not yet experienced psychotic symptoms. The
goals of these early intervention programs are to detect early on
emerging psychosis, to intervene to prevent further development of
disfunction, psychological disfunction, to delay the onset of
disorder if you can't prevent the further development of it and to
reduce treatment delay at the first episode.
How do they get people into these studies? Well, it is based on
an accumulation of risk factors, and they use a statistical
risk-oriented approach, but we still don't know who our target
population should be for these prodromal studies, and this is where
markers can come in.
Also, through the use of risk factors and endophenotypes, we
would know which ones are the best screening tools for inclusion
into these early trials and how soon we should be including people.
So at this point, we know that schizophrenia is a genetic disorder,
and we are investigating the different neurocognitive impairments
to identify the biological underpinnings of the disorder.
It is gratifying to participate in dispelling myths about
schizophrenia and then educating the public about the disorder.
Chairman Deal, thank you for the opportunity to provide
testimony to the committee on this important health topic.
And thank you, Representative Sue Myrick and Representative
Tammy Baldwin, for your ongoing support of research and
education in improving the lives of people with mental illness.
[The prepared statement of Dr. Diane C. Gooding follows:]
PREPARED STATEMENT OF DR. DIANE C. GOODING, ASSOCIATE
PROFESSOR OF PSYCHOLOGY AND PSYCHIATRY, UNIVERSITY OF
WISCONSIN
Introduction
Good morning, Chairman Deal, Chairman Barton, and
members of the Subcommittee. Thank you for inviting me here
today to provide testimony on the biological basis of
schizophrenia. My name is Diane Gooding, Associate Professor of
Psychology and Psychiatry at the University of Wisconsin-
Madison. My primary areas of research are: identifying and
validating indicators of heightened risk for schizophrenia and
related conditions and identifying and studying individuals
putatively at heightened risk for the disorder.
Defining schizophrenia
Schizophrenia is one of the most severe forms of
psychopathology. It is a disorder that affects one's thoughts,
feelings, goal-directed behaviors, social functioning, and even
one's self-care. Since the early observations of Kraepelin [1896]
and Bleuler [1911], schizophrenia has been regarded as a primarily
cognitive disorder of neurobiological origin. It is an equal
opportunity disorder, affecting individuals of all races, ethnicities,
and socioeconomic strata. Although its prevalence is relatively low
(1.1% of population aged 18 and older; APA, 2000), clinicians and
researchers often regard schizophrenia as the "cancer of the mental
illnesses" due to its severity, chronicity, societal costs, and
personal costs to affected individuals and their loved ones.
Clearly, schizophrenia is an important public health concern.
Although there are some palliative treatments for schizophrenia,
the mechanisms underlying the disorder remain unknown. If the
long term goal is to prevent schizophrenia, then an intermediate
goal would be to identify the pathophysiology and etiology of the
disorder.
Diagnosing schizophrenia
There is no direct measure of the neuropathology of
schizophrenia at present. Currently, the diagnosis of schizophrenia
is made on the basis of symptoms, which are inferred based on the
individuals' language and behaviors. There are symptoms which
represent an exaggeration of normal functions, such as
hallucinations, the false perception of sensory experiences (such as
hearing voices, or seeing things that aren't there) and delusions,
which are false beliefs that are persistent, unusual, and unshakable.
Although most of the general public is aware of the florid
symptoms of delusions and hallucinations, they have less aware of
the symptoms of schizophrenia which represent the absence of
normal functions and behaviors. These symptoms include
amotivation/avolition (loss of motivation), anhedonia (loss of
pleasure), alogia (reduced speech), affective impairments (such as
loss or restriction of emotional display) and attentional
impairment. The clinical picture of schizophrenia varies from
patient to patient. Not all individuals with schizophrenia have the
same constellation of symptoms and not all have the same severity
of impairment. Despite the apparent heterogeneity of
schizophrenia, there is a core underlying deficit; the core deficit in
schizophrenia is a cognitive one.
The genetic basis of schizophrenia
Schizophrenia is not the result of the way in which a person is
raised, nor is it the result of a personal weakness or failure on
behalf of the affected person. Contrary to earlier notions about the
causes of schizophrenia (e.g., the schizophrenogenic, ambivalent
mother) schizophrenia is a genetically-based brain disorder. Family
studies indicate that individuals who are biologically related to a
person with schizophrenia are at much higher risk for developing
schizophrenia. The risk of developing schizophrenia for a person
who is related to someone with schizophrenia increases as a
function of how many genes they share in common.
The role of genes in schizophrenia has been demonstrated by
twin and adoption studies. In order to estimate the extent of the
genetic component of any trait or disease,twin studies compare the
concordance rate, or the likelihood of both twins having the same
illness, between monozygotic (identical) and dizygotic (fraternal)
twins. The greater the monozygotic twin concordance compared to
the dizygotic concordance, the greater the inherited component.
The risk for schizophrenia for a co-twin of a schizophrenia patient
is significantly higher (46 - 58%) for an identical (monozygotic)
twin than for fraternal (dizygotic) twins (15%). Adoption studies
demonstrate that a shared genetic component, rather than shared
familial environment, contributes to susceptibility for
schizophrenia. Adoption studies indicate that adopted-away
biological offspring of schizophrenia patients are also at
heightened risk for schizophrenia. These studies indicate that it's
shared genes, not shared environments, that underlie the increased
risk of schizophrenia in relatives of individuals with schizophrenia.
Genes account for approximately 68 to 85% of the underlying
risk for schizophrenia (McGuffin et al., l995). The consensus is
that genetic factors that cause schizophrenia are necessary but not
sufficient for the development of schizophrenia. One doesn't
inherit schizophrenia; one inherits susceptibility to schizophrenia.
Environmental risk factors are also important, and the genetic and
environmental factors may interact. Nearly all of the theories of
the genetic basis of schizophrenia are based on what we call a
diathesis-stress model. In a diathesis-stress model there's a
diathesis (or susceptibility) which is biological in nature. The
manifestation of that diathesis is triggered by a stressor, which may
be environmental (pregnancy and birth complications, early
childhood brain damage such as ischemic attacks/hypoxia, early
exposure to viral agents, use of psychoactive substances such as
cannabis or amphetamines, or psychosocial stress).
In a complex disorder such as schizophrenia, there are likely to
be many genes that are involved in predisposing people to the
disorder. The genes may affect brain development, they may affect
neurotransmitter systems, or they may affect individuals at both
these levels. Investigators and theorists differ in terms of the
number of genes that they believe are likely to be implicated in the
underlying diathesis for schizophrenia.
While we can conclude that there's a strong genetic basis for
schizophrenia, we have not yet identified the genes that are
implicated. We are hopeful that new molecular techniques and
modern statistical analyses can allow us to focus in on particular
genes that confer risk to schizophrenia. The more genes that are
associated with the disorder, the harder it will be to replicate
associations between the disease and a given gene. However the
search for "schizophrenia risk genes" has been made more difficult
by the fact that at present most researchers rely upon the presence
of symptoms (disease phenotype) to identify individuals who are
most likely to possess the genetic diathesis (genotype). Indeed,
progress in this area is stymied by the phenotypic heterogeneity of
the disorder, i.e., the diversity in clinical presentation of the
disorder, as well as the likely existence of etiological
heterogeneity. It remains very possible that there are different
causes for schizophrenia, all of which can lead to the same
outcome (Gooding & Iacono, l995).
Endophenotypes
The identification and use of heritable neurocognitive markers
(known as endophenotypes; Gottesman & Gould, 2003) can be an
invaluable aid in the genetic dissection of schizophrenia. Here are
characteristics of these biobehavioral markers of liability: low
prevalence among the normal population; genetic transmission;
significantly higher proportion among affected individuals;
stability over time; independence from clinical status (i.e.,
symptom remission vs. acute symptoms), and presence in
unaffected relatives of affected individuals.
There are several advantages to the application of
endophenotypes to the search for the biological basis of
schizophrenia. First, endophenotypes may assist genetic studies of
schizophrenia because they can provide a way to identify
individuals carrying the genetic risk. Endophenotypes are believed
to be closer in the etiological chain to underlying genetic factors
than the symptoms of the disorder. Moreover, endophenotypes
have associated brain regions and circuits that may provide further
clues about the areas that are dysfunctional in the schizophrenic
brain.
Examples of some promising markers of genetic liability for
schizophrenia include: oculomotor deficits such as smooth pursuit
eye tracking dysfunction and saccadic inhibition deficits; working
memory impairments; and sensory gating abnormalities such as
P50 nonsuppression. The occurrence of oculomotor impairments,
such as smooth pursuit eye tracking abnormalities has been a
consistent research finding since the l970s. Individuals with
schizophrenia have marked difficulty matching their eye velocity
to the velocity of a slowly moving target, which results in
abnormal smooth pursuit eye tracking. Indeed during smooth
pursuit eye tracking, individuals with schizophrenia show
insufficient inhibition of small fast eye movements, which tends to
take their eyes further away from the target they're trying to
visually follow. These deficits are observed in a disproportionate
number of schizophrenic individuals even during their first episode
of illness.. Some of my early work indicated that this abnormality
is stable over time, regardless of chronicity, medication status, or
clinical status. Another potential marker of a schizophrenia
liability is a deficit in antisaccade task performance, in which
individuals are instructed to look immediately to the opposite side
of a laterally displaced visual target. The neural basis of eye
movements is well understood, so this remarkably consistent
finding in individuals with schizophrenia and their first degree
relatives (siblings, parents, and offspring) supports the notion that
schizophrenia is a brain disorder.
Working memory is defined as the ability to hold information
in temporary storage, manipulate that information, and use it to
guide subsequent behavior. Spatial working memory impairments
in schizophrenia were first demonstrated in the early l990s (Park &
Holzman, l992). Since then, several investigators have shown the
following: spatial working memory impairments in schizophrenia
are common, they're seen in unaffected first-degree relatives such
as parents and siblings, and they're stable over time.
Schizophrenia patients have these deficits whether they're acutely
psychotic or in remission, whether they're medicated or not,
whether they're hospitalized or fully functioning in the
community.
In the P50 paradigm, two auditory stimuli are presented in
quick succession. Normally, a person's neuronal response to the
second stimulus will be smaller (lower amplitude) than the
response to the first stimulus. P50 suppression is an indicator of
information processing, or sensory gating. Individuals with
schizophrenia fail to show this P50 suppression. Decreased P50
inhibition is found in approx. 50% of patients and in 10% of
healthy subjects. P50 nonsuppression is also frequently observed
in the first-degree relatives of schizophrenia patients.
Who is at risk for schizophrenia?
There's increasing evidence that suggests that we may be able
to identify the underlying diathesis, or viability to schizophrenia,
before the risk condition progresses to full-blown schizophrenia.
There are several ways of identifying individuals at heightened risk
for the later manifestation of schiozphrenia: they can be identified
on the basis of genetic, psychometric (questionnaire/inventory),
biobehavioral, or clinical risk factors. Much of the knowledge
gleaned about the study of individuals at genetic risk for
schizophrenia has been based on studies of the offspring of
schizophrenia patient (Erlenmeyer-Kimling, 2000). The presence
of clinical risk factors can also be used to identify individuals at
heightened risk for the development of schizophrenia. One
example of the clinical high-risk strategy would be to study
individuals who have clinical disorders that are genetically related
to, but less severe than schizophrenia, such as schizotypal
personality disorder.
In the psychometric high-risk method, at-risk individuals are
identified on the basis of their psychometric profiles using
questionnaires or instruments such as the MMPI. Much of my
research at the University of Wisconsin-Madison focuses on
elucidating the developmental trajectory from risk status to clinical
disorder, whether schizophrenia, or a related, but less severe
condition such as schizotypal personality disorder. This is done by
following at-risk individuals over time, and comparing them with
typically-developing, age-matched individuals. Using a set of
well-validated instruments known as the Chapman psychosis-
proneness scales, investigators (Chapman et al., l994) observed
that individuals who report the experience of strange perceptual
experiences are at heightened risk for schizophrenia and other
psychotic disorders such as psychotic mood disorders. Individuals
who report social anhedonia, or the reduced ability to experience
pleasure and/or a deficit in the ability to seek and experience
pleasurable activities, are at heightened risk for the specific
development of schizophrenia and schizophrenia-related
conditions (Gooding et al., 2005). These findings are consistent
with data from the genetic high-risk studies that indicate that
attentional deviance in early childhood (a risk factor for the later
development of schizophrenia) was associated with poor social
skills, anhedonia in adolescence and social deficits in early
adulthood (cf. Erlenmeyer-Kimling et al., 2000).
Predicting the development of schizophrenia in at-risk individuals
Studies indicate that offspring of schizophrenia patients who
later develop schizophrenia and schizophrenia-related disorders
displayed attentional deficits, verbal memory deficits and gross
motor impairments even as children. However, among the
offspring of schizophrenic patients, only a subset of the at-risk
individuals were later diagnosed with a schizophrenia-related
illness. A composite index of risk was a better predictor of a
schizophrenia-related outcome than reliance upon a single
indication of deviance. Because not all good predictors of
schizophrenia outcome, such as lower IQ or motor impairments,
are indicators of a genetic liability towards schizophrenia,
searching for the presence of the endophenotypes in the genetically
at-risk population is especially beneficial. At present, we cannot
predict who, among the individuals at risk for schizophrenia, will
later manifest the disorder or one of its spectrum disorders, such as
schizotypal personality disorder, or schizoaffective disorder.
Can we intervene in the case of at-risk individuals before they
develop psychotic symptoms?
A newer research strategy concerns the study of individuals at
the prodromal stages of schizophrenia, before they have an
outbreak of manifest psychosis. So clinical researchers attempt to
treat individuals who are showing functional deficits like those
seen in schizophrenia, but who are not yet experiencing the
psychotic symptoms of delusions and hallucinations. This research
strategy is based on the premise that the premorbid and prodromal
phases of schizophrenia are windows of opportunity to intervene,
in order to maximize the likelihood of a better disease outcome.
These early intervention programs are preventive in the sense that
part of the goal is to prevent further psychosocial decline, and/or to
delay the onset of severe psychosis. The risks and benefits of these
early intervention programs are currently investigated and debated.
The preventive treatment of individuals who show an accumulation
of risk factors is based upon a statistical risk-oriented approach to
treatment. The study of biologically-based markers, in conjunction
with other screens, e.g. clinical signs and behavioral symptoms,
can be useful in terms of further identifying who the target
population should be, which risk factors are most valid as
screening tools for the entry into the study, and what prodromal
deficits should be targets for intervention. Endophenotypes are
increasingly being integrated into some of these prodromal studies.
Current status of schizophrenia research
The consensus is that schizophrenia is a genetically-mediated
neurodevelopmental disease that is typically developed during late
adolescence and early adulthood. We don't know which genes are
involved, how many need to be present, and how they affect brain
development.
Schizophrenia is associated with neurobehavioral impairments.
We know that as a group, people with schizophrenia differ from
healthy people in terms of neurocognitive and psychophysiological
performance. A disproportionate number of biological relatives of
schizophrenia patients also display these deficits, albeit to a lesser
degree. Research indicates that these biobehavioral deficits are
stable over time. We can conclude that several of these
neurocognitive impairments are potential markers of increased
susceptibility of risk for schizophrenia. The study of these putative
markers can be useful in terms of refining the diagnosis and
classification of schizophrenia and schizophrenia-related disorders.
These markers also have the potential to enhance our current
research strategies for identifying individuals at heightened risk for
schizophrenia. We know that not everyone at heightened risk for
schizophrenia goes on to develop the disorder. However, it appears
that even prior to the onset of the disorder, individuals who later
develop schizophrenia deviate on a range of functions, including
attention and information processing, motor development,
language difficulties, and social behavior. We don't know how
schizophrenia develops from risk to manifest disorder. We are at
the very beginning of discerning the ways in which the at-risk
individuals who later develop schizophrenia differ from those at-
risk individuals who remain clinically compensated. We are still
investigating whether indicators and predictors which have validity
at the population level have predictive validity at the individual
level as well. Prodromal studies of schizophrenia are underway.
Summary
My hope is that the scientific community will have adequate
resources to continue the research, so that can we further the
progress of unlocking this epigenetic puzzle that we call
schizophrenia. I'm proud of the work that we are doing in
Wisconsin to help demonstrate the ways in which schizophrenia is
a genetically-mediated neurodevelopmental disorder. At the
University of Wisconsin, many of the researchers like myself have
partnered with mental health professionals, mental health
consumer organizations and community advocates such as NAMI
(which originated in Madison, WI) to educate the local community
as well as the community at large about schizophrenia. It is
especially gratifying to participate in dispelling myths and
correcting misconceptions about schizophrenia and schizophrenia-
related disorders through education, research, and advocacy.
Thank you for the opportunity to offer testimony on this
important health issue. At this time, I would be happy to answer
any questions.
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MR. DEAL. Thank you very much.
I will begin questions.
You have talked about these markers of genetic liability. Did
you call them endophenotypes?
DR. GOODING. Endophenotypes, and they are closer in the
chain, the causal chain, than phenotypes which are the clinical
manifestations, the symptoms of a disorder.
MR. DEAL. Would the same general statements about these
markers apply to other disorders other than schizophrenia?
Dr. DePaulo, you are indicating yes?
DR. DEPAULO. Absolutely. But they are better known in
schizophrenia than they are in depression or bipolar disorder. So
they are very helpful.
MR. DEAL. Dr. Insel, are we further along in any of these three
general areas we are talking about in terms of research? Since we
have talked about schizophrenia, are we further along in the
research for that disease than we are for the bipolar or just simple
depression?
DR. INSEL. Yes, I think we are. It is surprising. If one had
looked at this 20 years ago, one would expect that all of the big
breakthroughs in genetics and in the biology would have involved
bipolar disorder, and Dr. DePaulo has been at the cutting edge of
that science. But much to our surprise, it is in the area of
schizophrenia where we have found the greatest association
between genetic variation and having the disease or being, as
Dr. Gooding mentioned, at risk for the disease. So, right now,
schizophrenia is the place where I would say there is the most
traction and the most excitement.
MR. DEAL. We have made the analogies to cancer in several
different comments that have been made. When we think of
cancer and the treatment for it, we normally think of surgically
removing it or treating it chemically to shrink the cancer, or
perhaps eliminate it altogether. I gather we are not able to make
that same analogy in terms of the treatment of these mental
diseases. Can you surgically remove something that would
eliminate any of them? Can you chemically treat them to make it
disappear or simply try to overcome what is there?
DR. INSEL. The question really comes down to, can we go
from response to cure? And that is true in the case of cancer and
heart disease; we have set the goal at cure. And that is particularly
true of diabetes, where one looks for what is going to be the cure.
Increasingly in medicine generally, we are having to settle for
being able to help people with the chronic illness to be able to live
better lives, what we call more recovery than cure. The cure is not
yet in sight for most of these disorders, but there are opportunities
to reach for recovery, and more than we have had in the past.
Some are medical, and some are actually psychosocial treatments.
In the case of schizophrenia, we know that some of the
treatments, some of the interventions that make the greatest
difference are not necessarily medications, although those are
necessary. It is helping people with this chronic illness to be able
to live with it, to be able to live in a community where people are
supportive. Getting families involved and getting them back to
work, is really essential.
MR. DEAL. Anyone else?
DR. GOODING. I would like to add that there used to be the
myth that if you got the diagnosis of schizophrenia, it was
tantamount to a death sentence or the prognosis was very poor.
We do have better treatments, and as Dr. Insel said, right now, we
are concentrating on helping people really further integrate into the
community.
We have a program that started actually in Madison,
Wisconsin, the PACT program, Program for Assertive Community
Treatment, that really worked towards bringing the focus of
treatment outside of the hospital into the community. It is a
community-based multidisciplinary treatment strategy.
They leave patients where they are, and they help them get into
the workforce, live independently, and really move toward
recovery and self-actualization so it is really gratifying to see the
improvements and be able to tell people, you have been diagnosed
with this chronic disorder, but here are the things you can still do
and here are the ways we are going to help you get there.
Including psychosocial interventions, social skills training, and so
forth.
DR. DEPAULO. One last point, in the analogy of cancer, it was
the appearance at the macroscopic level, at the eyeball level, of
tumors that led to the recognition that surgery might be helpful.
But from the research in the molecular biology of cancer have
come treatment strategies that we never imagined, such as
treatment strategies designed through hormones, through the
immune system, and through the blood supply to cancers.
Those are the kinds of treatments that you can't imagine yet
that we hope to come up with to aid all of these other treatments in
schizophrenia, bipolar disorder, and depression.
MR. DEAL. Thank you.
Ms. Baldwin.
MS. BALDWIN. Thank you, Mr. Chairman.
I would like to hear a little bit more about the impact of recent
cuts or flat funding of NIH with regard to the research. As you
heard me proudly say in my opening statement, I represent the
University of Wisconsin, Madison, which receives a great deal of
support for biomedical research through NIH funding, and I have
been hearing anecdotally from researchers on campus about the
impact of recent flat funding in terms of grants cut short or
experiencing their colleagues with very high-quality grant
applications which are being denied at a much higher rate. No
doubt these are because of Congressional action in funding the
NIH in recent years. I know in the past 4 years, we have not kept
pace with medical inflation, which is around 3.5 percent, meaning
the cost of doing research is increasing, but the funding available
for the research is either flat funded or cut.
I am wondering if any of our researchers here today have felt
the effects of these policies, and has it affected your own research
or the research of your colleagues? And additionally, how is it
affecting recruitment of new talent, new investigators into the
area?
DR. DEPAULO. As a chairman of a department that has 180
faculty members, I would be happy to tell you, because the results
are palpable and very visible.
To the point, my faculty has been extraordinarily stable across
the years. When people come onto the faculty at Hopkins, they
tend to die on the faculty, much later, thankfully, and after very
successful careers. But recently, in the last year and a half, we
have been losing young very talented investigators, actually
several of them funded by the NIH, because they can see the
handwriting on the wall, as they put it, and they are going to places
that don't offer them the same kind of scientific opportunities, but
where they are sure of being funded. I am very concerned about
the loss of a generation of young, very talented investigators.
DR. JAMISON. I couldn't agree more, and I think it is such an
exciting time in neuroscience. All of us have lived with so much
hype and promise for so long, and now in the last 10 years, it really
has begun to take off. It seems the oddest, most strange, and
devastating time to cut back. It really will affect tens of thousands
of lives. There is no question about it.
DR. GOODING. I can say that personally I have been the
beneficiary of NIH grant funding, and it was invaluable in terms of
being able to investigate the risk factors and to follow
longitudinally people at hypothetical risk for schizophrenia. We
found some really exciting things, and we would not have been
able to do it otherwise with the cuts in funding or at least the flat
funding.
We have more ideas from some of my colleagues in my
research lab, and it is really difficult because they are saying, yes,
this is a great idea and it would be very helpful in terms of
furthering the field. But you know what, in order to get NIH
funding right now, you are going to need a lot of pilot data. How
do you get the pilot data if you don't have the funding? So it is
very frustrating.
DR. INSEL. I feel the pain from our side. As you mentioned,
the biomedical inflation rate is somewhere between 3.5 and 4
percent. That is part of our challenge. Although we have a
doubling since 1998, we are funding more grants, and the grants
are larger than they were. We still are able to do quite a bit of
great science, but this has been a time where we have had to set
priorities.
The reality is that the Nation, this Nation, invests about $4.76
per American for research on mental illness each year. And we
have to ask not whether this is a cost center, but whether this
investment is the right investment for the level of concern that you
have heard this morning.
MS. BALDWIN. Thank you.
Thank you, Mr. Chairman.
MR. DEAL. Thank you.
Ms. Myrick.
MS. MYRICK. Thank you, Mr. Chairman.
Dr. Jamison, I know you have done so much research and are
an expert on suicide, and I want to ask you a question and also
make a comment because we have talked about the people who
have the illness committing suicide themselves.
Recently, in our community, we have had two fathers, living in
great neighborhoods, great careers, everything about them very
normal, one of them who actually was successful in killing two of
his own children. He did not take his own life. The other one tried
to kill both of his young children. One is still living, but he took
his own life.
I share that because that is another aspect of this that we don't
talk about, not just taking their own life but taking someone else's
life as well.
Do you know what percentage of bipolar people actually do
end up committing suicide, because I know a lot attempt it? Our
granddaughter attempted it several times, thankfully
unsuccessfully. But any percentages on that?
DR. JAMISON. There are percentages depending on how
serious the form of bipolar illness is. If you take people who have
been hospitalized for bipolar illness, the rate of suicide goes up
somewhere between 15 and 20 percent, which is a higher mortality
rate than most forms of cancer or heart disease. I think one of the
unfortunate things about psychology and psychiatry is that, as a
profession, we have not used the words "mortality rate" when it
comes to our own illnesses. So there is this notion that suicide is
off in the ether and it is caused by stress or things that go on in the
environment as opposed to 90 to 95 percent of the time being
associated with a major psychiatric disorder.
We have done ourselves a big disservice by not focusing on
how very strongly associated, and of the illnesses, major
psychiatric illnesses, certainly bipolar disorder has the highest
suicide rate. It is a very real concern.
MS. MYRICK. Dr. Insel, I was glad to hear you talk about
personalized care for these diseases just like we have done for
cancer. That is really exciting. And yes, I know funding is a
problem for that, but that is something that is good on the horizon
where we haven't been before.
Either you or Dr. DePaulo, you introduced me to the term of
presenteeism some time ago, people who are actually present at
work but don't do anything. Would you both elaborate on that,
because I think that is something that we totally overlook in
society? We talk about people who are absent from work because
they have problems. What about the people who actually show up
for work but don't do it?
DR. DEPAULO. Since depression is probably one of the most
common sources of that kind of lost productivity, what you find
from your patients is that, one is, first off, when they are depressed,
depression is not simply feeling sad when your dog dies, people
have multiple inabilities to function. Concentration and attention
is certainly one of the things hit quickly and hard by depression.
The second thing that happens is the idea that even having an
interaction with somebody, going to see a client, going to interact
with other workers to get something done, becomes a big stress for
people, and so they tend to avoid doing that, and they tend to be
more irritable. So people, when they are depressed, although most
are in the workforce and about 80 percent are working. They are
unable to concentrate, they tend to withdraw a bit because they are
irritable, and they don't have the energy to sustain the interaction
to get the job done.
DR. JAMISON. And they are also more likely to use alcohol and
drugs which then compounds all of the problems.
MS. MYRICK. There is an article in the Wall Street Journal
today that says, a study that says heart troubles often lead to
depression, and it is talking about people who are depressed who
have heart attacks, and I thought it was very interesting.
On the schizophrenia side, Dr. Gooding, this is an area that I
don't understand very well. I read through your testimony, and so
much of it is over my head, and forgive me. When you talked
about the multiple personality disorder and schizophrenia and how
that is confused, can you address that a little bit?
DR. GOODING. That is a common misconception. Multiple
personality disorder, which now is called dissociative identify
disorder, has to do with different personality states, different
memories and one aspect of the personality not knowing or having
awareness of other aspects of personality. That is very different
from schizophrenia.
Schizophrenia is really a cognitive disorder in which there is
some exaggeration of some functions, such as delusions, false
beliefs, hallucinations on the one hand, and that is what most
people think about when they think about schizophrenia. But more
devastating for people with schizophrenia are the negative
symptoms, the symptoms that represent loss or diminution of
functioning and those are things like loss or lack of motivation;
anhedonia, loss of pleasure; reduced speech; reduced
expressiveness, facially, and emotionally. As you can see, it is
very different. One is clearly a psychotic disorder. Where there is
lots of evidence for genetic basis in dissociative identify disorder,
there is still a bit of controversy regarding the rates of diagnosis
and the validity of it.
MS. MYRICK. Mr. Chairman, if I may, our colleague, Patrick
Kennedy, was here for a while and had to leave, but I just wanted
to take this opportunity to thank him about being open about his
challenges because that is a big help to everybody.
Thank you.
MR. DEAL. Thank you.
Mr. Rush is recognized for questions.
MR. RUSH. Dr. Insel, can you tell me, can you tell what the
NIMH is doing with regard to research on postpartum depression
and psychosis?
DR. INSEL. There is a broad range of studies that are looking at
both the mechanisms and the best treatment for women during this
period.
It is a complicated area because there are many different
syndromes that fall under the umbrella of postpartum depression,
and postpartum psychosis sometimes overlaps with that, and
sometimes is quite different.
There is no question that in some way it relates to the
endocrine changes that accompany the end of pregnancy. But we
still don't understand the mechanism by which that group, that
profile of endocrine changes, puts women at risk. We do know
that the risk is huge, and women at that point in life, especially if
they have a history of depression, are many, many times more
likely to develop a severe depression at a moment when their
energy and attention is more vital than at any other time to their
infant.
So it is an area of high priority for our institute where we hope
to be able to have some real discoveries very soon.
MR. RUSH. Do you have any opinion about the way in which it
is being viewed or the way that it is being portrayed or not
portrayed as far as our legal system is concerned?
DR. INSEL. I am not sure what your concern is?
MR. RUSH. There seems to be a strong reluctance by the
judicial system to even entertain the possibility that postpartum
psychosis is a mental illness, and therefore, those unfortunate
victims find themselves in positions where they are denied really
the full weight, I would say denied a fair trial.
DR. INSEL. Science would certainly support the idea that this
form of depression, or psychosis, either one of them, are brain
disorders, just as other forms of major depressive disorder and
other psychotic illnesses. We have that kind of evidence, and we
also know they are treatable.
But as we have been saying all morning, one of the gaps we are
facing here is that we have the science on the one side, which often
doesn't match up perfectly with public policy. Part of the
challenge is making sure that science informs service at some
point.
MR. RUSH. Any other comments?
DR. JAMISON. I think, in general, there is a huge gap between
what many judges know about mental illness, and I was actually
talking to a friend of mine who is an attorney and asking him what
kinds of courses were taught in law school. Given so much of the
law relates to human behavior and abnormal human behavior, what
kinds of courses are actually taught about psychopathology and the
science of psychopathology? Next to none, which to me was
staggering because we all know the cases that have come before
the courts with postpartum psychosis where a mother has killed
one or more children and how dreadful that is and how preventable
often it is.
What strikes me is that highly educated lawyers know very
little about psychopathology despite the fact that the ones in the
criminal system deal with it all the time.
MR. RUSH. I have given you an example. I have a bill that is
pending in the Congress that is called the Melanie Blocker-Stokes
Postpartum Depression Act. Melanie Blocker-Stokes she was a
young African-American woman, professional, came from an
upper middle class family, was a sales manager for a leading
pharmaceutical company. She married a physician. She had a
disease. Nobody knew what it was, and she committed suicide.
She jumped out of a tenth floor hotel window on a bright Saturday
afternoon and left one child. Her husband was a physician, and he
had no understanding. He had never heard of a postpartum
depression, and so the medical profession is also ignorant about
this. I think it probably has a lot to do with the fact that it affects
women, and there is a disparity in terms of concern about women's
health.
I am just astounded that even Members of Congress, when I
went to get cosponsors on the bill invariably, out of all of the
people I talked to, probably a third of them had some experience
with somebody who had postpartum psychosis, but we still have
not been forward in our solutions or our attempts to deal with this
particular issue.
Mr. Chairman, I yield back the balance of my time and will
have some additional questions if we do a second round.
MR. DEAL. I thank the gentleman.
Dr. Burgess.
MR. BURGESS. Thank you, Mr. Chairman. I apologize for
being out of the room for most of the testimony.
Dr. Insel, it comes to mind, hearing your response to questions
from others on the committee, just as an outsider looking in, and I
have only been here a short period of time, but as an outsider
looking in, I can't help but feel there is a lot of duplication, for
want of a better word, when you look at the various institutes,
National Institutes of Health, National Institute of Mental Health,
National Institute on Alcohol Abuse and Alcoholism, and run
through the list.
MR. BURGESS. Has that been at all an encumbrance upon the
correct application of research dollars as you see it?
DR. INSEL. Well, as I think you have heard from NIH Director
Zerhouni when he has testified here, there has been a huge, new
thrust to try to coordinate all of the Institutes around projects like
the NIH RoadMap which are across Institutes and involve an
integrated and shared approach to the biggest impediments of
medical science. I might add that, because of the Institutes that
you've mentioned, in the last 2 years the groups that are interested
particularly in the brain and mental disorders and drug abuse have
also developed their own integrated effort which is called the
Neuroscience Blueprint. That is actually very much like the
roadmap in which, rather than having redundancy and duplication,
we are actually bringing the best from all of those Institutes
together to try to address common problems. And there are many
common problems, because we are all ultimately dealing with the
central nervous system. But we come at it either through the eye
or the ear or, in our case, through abnormal behavior, but we have
this opportunity now to do this in a very integrated way, and I
think it is working very well.
MR. BURGESS. Is that in a form where it can be shared with
Members of Congress at this point, the Neuroscience Blueprint?
DR. INSEL. Absolutely, I would be happy to submit that for the
record. We are in our second year. We have a very active Web
site. We have 15 or so projects already funded and maybe more
than that, and we can get you up to date on all those issues.
MR. BURGESS. I will leave it up to the Chairman whether or
not he wants it in the record, but I know my office would very
much appreciate being informed of that because you are correct,
Dr. Zerhouni, in his own inimitable way, implied that perhaps
Congress shouldn't be interfering with the make-up, but he also
acknowledged that there was, at least to the uninitiated outsider, he
could understand how the appearance of duplication of services
might lead one to believe that perhaps it is not the best or most
efficient application of research dollars.
In your written testimony, talking about the new things that are
going on between understanding of the human genome and
neuroscience, it actually sounds pretty exciting. Can you give us
any specifics to things that you are working on in particular there?
DR. INSEL. Very quickly, as we were mentioning before, I
think the greatest traction happens to be right now in schizophrenia
where we have a whole range; I think there are eight or ten
candidate genes where there seems to be an association between
variation in a particular gene sequence and risk for the disorder.
But hands down, the most exciting opportunity now is what is
called whole genome association, and that has been made possible
by something called the haplotype map. This is a map of human
variation at the genetic level, so it is a map of where all the most
common variants are in the human genome. It offers the
opportunity to scan those very, very quickly in a way that we never
imagined possible 5 years ago, quickly and cheaply. All of this has
really come about in the last 6 months, the whole human genome
hap map will be available later this year, but we have a very good
working draft that has already had a tremendous impact on a whole
range of disorders. We expect that will affect the way we look at
variation and the molecular basis of risk in mental disorders as
well.
MR. BURGESS. And do you see a date on the horizon where
that will be generally available to the clinician?
DR. INSEL. Well, the big challenge, Dr. Burgess, is how you
go from having an exegetic research finding that explains, say,
5 percent or 3 percent of the risk, to being able to take that and
make a difference for clinicians. Where I think it will come first is
not actually in the diagnosis of any of these disorders but in the
selection of treatments.
So we already have evidence that has just come out in the last
6 weeks that we can predict who is more or less likely to respond
to a serotonin reuptake inhibitor treatment for depression, and I
think we will have a number of those genetic variants that tell us
about medication response. As you know, we call that
pharmacogenomics, and I think that is going to be the first
deliverable to happen very quickly.
MR. BURGESS. It is no secret that in my mind at least managed
care is not the thing for the practice of psychiatry in this country.
But one of the unintended consequences was for someone like
myself who is in more of a primary care field, OB/GYN, by
default, I became the prescribing physician for antidepressants, and
I can't tell you how excited I am to hear you talk about that
because, so often, I was left with my best clinical judgment as to
which of this wide panoply of antidepressant medications might be
the best one for this particular patient. And probably about
80 percent of the time, I was satisfied with the result. But about
20 percent of the time, I was not only unsatisfied with the result, I
was struck by how wrong I could have been on the selection of a
particular agent for a particular patient. So that just, from the
perspective of a practicing physician who had the practice of
psychiatry forced upon him by external forces in the insurance
world, I am very glad to hear you talk about that because I think it
is going to make us much more effective in our ability to deliver
care for patients.
Now, Mr. Rush, who has I guess already left, talked a little bit
about postpartum psychosis and unfortunately probably using
depression and psychosis interchangeably there where it is not
actually well suited for that interchangeability. But you talk about,
in the imaging part of your discussion on area 25, sounds like
where they took the alien from Roswell, but nevertheless, area 25
in the brain that has some specifics to it, have you looked into the
management of postpartum psychosis with these imaging
techniques?
DR. INSEL. That is a great question and the answer is, no, that
study hasn't been done, recognizing that much of this research has
really just emerged in the last 9 to 12 months. Much of it is still
underway, so there is a lot of interest in moving forward with those
kinds of studies for postpartum depression, but it has not yet been
done as far as I know.
MR. BURGESS. Again, he alluded to the difficulty with the
disease being much more common than people think, and yet, at
the same time, even the unfortunate individual who was a
physician and married to a patient didn't recognize the signs, and I
will tell you, as a physician who is also a husband, it is sometimes
difficult to recognize signs, not just postpartum depression but
from other more common illnesses. I think I missed the diagnosis
of chicken pox with all three children. We don't need to put that in
the record, Mr. Chairman.
MR. DEAL. It is there forever.
MR. BURGESS. But a tool like this would be so helpful, and
you know, during the course of the day, the average OB/GYN who
sees what 30 to 45 patients in order to pay overhead and liability
insurance and has to make a decision based on a 10- or a
15-minute interview with a patient who is struggling after delivery,
to know which ones are truly at risk. And, unfortunately, as we
have seen in Texas, some very famous and very dramatic cases of
postpartum psychosis that resulted in the injury to in some cases
multiple children within a family, the ability to be able to provide
that practitioner with a reliable test that would be
community-based or nearby in a community to be able to say, I
need to send you down to the Medical School to get this scan done
because I am concerned about your symptoms, that would be
tremendous to be able to put that in the hands of practicing
physicians across the country.
With that, Mr. Chairman, you have been very indulgent, and I
will yield back.
MR. DEAL. I think Dr. Insel wanted to respond.
DR. INSEL. The NIH mantra now is what we call the three Ps,
that is: predictive, personalized, and preventive. And I think all of
those together, if we can deliver that to individual practitioners, is
where we want to be.
MR. BURGESS. Mr. Chairman, just a point of personal
privileges, coming to Congress, I did not realize what a national
treasure the NIH was.
I have taken now a series of field trips out to a variety of the
institutes out there. Every time I do that, I come back so impressed
with what is going on and so optimistic about the future of our
country and what we are going to be leaving for our children,
because you guys are doing work out there that is nothing short of
fantastic. I will yield back.
MR. DEAL. Thank you.
Mr. Pickering you are recognized for questions.
MR. PICKERING. Thank you, Mr. Chairman, I want to thank the
panel, and I want to thank the Congresswoman from North
Carolina for her leadership. It was great to hear a physician on the
committee, Dr. Burgess, as he engages. And it is truly remarkable
the progress that we have made in understanding mental illnesses.
And as Congresswoman Myrick has appropriately defined various
brain diseases.
I would like to ask Dr. Insel what we have seen over the last
10 years, what would you say you see over the next 5 to 10 years
in our understanding, our ability to do the three Ps, to be able to
predict whether a child born next year could be susceptible to
autism-related disorders or to mental illnesses, bipolar, mental
depression, and to what degree will we be able to give those
therapeutic predictors or plans and help to our physicians and our
psychiatrists and psychologists, and to our families? And to what
degree will the pharmacological prescriptions be enhanced to
really make a difference in the lives of a lot of individuals and
families? So what do you see over the next 5 to 10 years?
DR. INSEL. Well, it is a tall order. Let me just give you the
10-second overview which is that the three Ps will come about
largely with the two best tools we have now which are genomics
and imaging. And you can probably add to that some better kinds
of neurocognitive batteries, as Dr. Gooding was talking about for
schizophrenia. We have already seen this with autism, although
we don't have the genetics yet, and imaging hasn't been
particularly informative. With some of the neurocognitive tools,
we have taken the diagnosis of autism from a point much earlier
from 5 years ago, when most children were being diagnosed at age
4, 5, or 6, depending on their level of access; we are now able to
reliably diagnose autism well before age 3 and, in some cases,
before age 2. And that is critical, because we know that if we can
intervene early, that we can, in some cases, preempt many of the
worst aspects of this very devastating illness.
I wish I could say we could now do the same thing for
schizophrenia. We are not quite there. But there is no question
that through the use of genetics, through imaging and through all
of these other kinds of tools like neurocognitive batteries, the
vision for mental disorders is very much the vision that we have
had for cardiology and cancer. For example, for schizophrenia, we
want to be able to intervene well before the first break, just as with
heart disease, we now intervene generally before the first heart
attack. And so much of what cardiology is about now is
preemption; it is treating people with lifestyle changes, with diet
and sometimes with statins to keep them from having a heart
attack.
We need to be taking just that pathway forward for
schizophrenia, for bipolar disorder, and for autism.
MR. PICKERING. Anybody else on the panel like to--and what
policies can we adopt to help accelerate, if Dr. Burgess was talking
about getting the scanning and the imaging capabilities out to the
physicians and to the community, what are the things that this
committee can do, both in research, and in practical resources to
the communities, hospitals, physicians, that would accelerate that?
DR. DEPAULO. Well, if I might and I will say that we all have
the dream that we are going to be able to, quote, "translate a basic
science finding into a deliverable treatment," and so far, those
things still take years to do.
So that is why I think that the war on cancer and the serious
work that is being done on heart disease is, I consider, about half
done.
But I think one of the things you can do is to obviously not
only increase funding for research but to make it predictable, so
that it won't be varying up and down so much. That would be very
helpful I believe, and I think Dr. Insel would possibly be very
much happier if he could plan ahead beyond the life of a particular
grant. I think that is also extremely important, as we were saying
earlier, for the careers, because we don't just need money. We
need young careers of people who are going to devote their lives
and their careers to this. You don't want to cut off a generation of
those people, so certainly those are two ideas.
I think in terms of translating, I think we need a number of
things to happen on the clinical side, but certainly I don't want to
neglect the idea of public education. I still think that is
fundamentally important, and when people know what they have,
they become much better in some ways. Coming from Dr.
Burgess, is that we find that it is easier to educate patients
sometimes than it is to educate physicians who weren't trained at a
time in which a certain development took place.
So those are certainly points I would make.
DR. JAMISON. One of the things that is always striking to me
is, parents learn about mondo bizzaro diseases that kids never get
that are very rare diseases, and they learn next to nothing about
depression and bipolar illness, which are very common illnesses.
It seems to me that pediatricians and doctors who are primary care
physicians have an obligation to not only learn themselves but also
to transmit that education through the school systems. One of the
things that is great, Johns Hopkins for example has a very
aggressive program in the Baltimore public and private schools to
educate kids, teachers, and parents about depression. I just think
this should be much more common than it is. There is one thing
that you can do in terms of research that is going to affect people
10 years from now; what can you do to keep people alive now with
what we do know?
DR. GOODING. I would like to echo that and say that education
is so critical, increasing public awareness, not just about mental
illness in general but about specific warning signs or specific
help-seeking or specific behaviors that would lend one's self to
realize that maybe they should start seeking help.
We also need to educate people. They need to know that there
are more advances now in terms of mental health treatment and
mental health research. So that they don't feel that there is no hope
and that they do go and follow up on the treatment
recommendations.
Furthermore, we need to educate people so that we can reduce
stigma because people are not going to go and admit to having
problems and they are not going to seek treatment if there is stigma
associated with doing so.
MR. PICKERING. Mr. Chairman, thank you.
And I would be interested to follow up just on how much we
are spending on the educational side of educating and informing
the public, but I know my time is up.
MR. DEAL. Thank the gentleman and to the panel, very
excellent testimony, and any documents that you wish to submit
for the record, Dr. Insel, one of the references to the question from
Dr. Burgess about that study would be certainly appreciated, and
we will, without objection, allow that to be included in the record.
[The information follows:]
MR. DEAL. I want to thank the panel very much for your
distinguished testimony.
Now I call the second panel to the table.
MR. RUSH. Mr. Chairman, I would like to ask unanimous
consent--there were questions I had of the first panel. I am sorry I
was out on the phone, but I would like to submit the questions in
writing so I might be able to get--
MR. DEAL. Yes, I have already done a unanimous consent that
would allow any member to do that, and certainly, I think they
would be willing to respond to your questions.
MR. RUSH. Thank you Mr. Chairman.
MR. DEAL. Likewise, we have a second distinguished panel.
We want to thank all of you for being here. It is my pleasure to
introduce them at this time.
STATEMENTS OF JENNIFER MARTIN, ATTORNEY, LAW OFFICES OF JENNIFER L. MARTIN;
GILBERT LAMPHERE, MANAGING DIRECTOR, LAMPHERE CAPITAL MANAGEMENT; AND PETE
EARLEY, WRITER;
MR. DEAL. Jennifer Martin is an attorney who is in private
practice in Topeka, Kansas. She is here today to talk about her
struggle with severe depression and her efforts to treat her
condition.
Mr. Gil Lamphere is a capital fund manager. Mr. Lamphere
has a very distinguished business record, having worked at Morgan
and Stanley as a Vice President and many other areas of the
business world, and, in 1998, founded Lamphere Capital
Management where he is the Managing Director.
And Peter Earley, who is a journalist and author, a New York
Times best-selling author and a former reporter at the Washington
Post. We are pleased to have him here today, and he is going to
talk about his son's mental illness and the family's experience in
dealing with bipolar disorder.
We are pleased to have all of you, and I will say to you as I did
the first panel, your written testimony is in the record, and we
would ask you if you would to use your minutes please to
summarize that and talk about issues that are of concern with you.
Thank you.
We will begin with Ms. Martin.
MS. MARTIN. Thank you, Mr. Chairman Deal. I want to thank
the Chair and the members of the committee and especially
Congresswoman Myrick for holding this hearing today and
allowing me to testify on this vitally important issue.
If anyone had told me 5 years ago that I would be sitting here
testifying in front of the House of Representatives about my own
mental illness, I would have told you that you were crazy and that,
certainly, I wasn't crazy, and I was never going to be crazy.
I grew up in the Midwest, outside of St. Louis in a normal
every day average household. I have the same parents I started
with. We had a dog and a picket fence.
Life was perfect. But inside, inside the family, I knew of
depression. My Mom had suffered from depression, from
postpartum depression and generalized major depressive disorder
her whole life, it was always untreated and only once diagnosed.
Her sister, my aunt, committed suicide in 1987 from diagnosed but
untreated bipolar disorder. So it was always the specter in my
family. I had bouts of depression, the blues, things like that, but I
thought that was normal because, in my family, everybody
suffered from depression that was undiagnosed, so that was my
normal life.
I sort of thought, once I grew up and got out on my own and
had my job and had my life, I would be happy, and things would
be fine.
So I kind of pushed aside those empty feelings or the bad
feelings I had. I graduated from the University of Missouri Kansas
City School of Law in the top of my class.
I was recruited by the two largest most prestigious firms in
Kansas City, went to one of them and had what everyone thought
was the perfect life. I made great money. I had good friends. I
had the perfect job. I had a perfect life, but I was absolutely
miserable. The fact that everyone kept telling me, oh my gosh,
you must be so happy with yourself, and life is great, made it
worse. I would go home and sit by myself and be miserable on a
daily basis.
We talked over and over today about stigma and the stigma of
mental illness. When I first started working at the law firm, I was
told, don't let them see you sweat. Don't let them know that you
are stressed because they will think you can't handle the work. So
I was able to push those feelings down, but then I had to be there.
I had to make billable hours. I had to work 7 days a week, and I
didn't have any recovery time. Partners kept asking me, what is
going on, you are not meeting your billable hour requirements? It
was like I had a secret life. During the day, I was a hot shot young
associate, and then, at night, I was binge drinking and using drugs
in an effort to mask the pain and mask the depression that I felt.
I can't even explain what it is like to live that secret life, for
people to say, oh, you have a perfect life and everything is rosy,
and then to be doing cocaine on the weekends and waking up from
a bender and not knowing what had happened the weekend before.
I was really sick, but I couldn't tell anybody because of the
stigma that was associated with depression. I mean, after all, smart
people don't suffer from mental illness.
I learned eventually that I did suffer from major chronic
recurrent depression. I finally sought treatment with the insistence
and the help of a friend in November 2003. I started receiving
counseling and antidepressant medications, and at that time, it was
covered by the law firm, and I had a great insurance program, but
it was too little too late. Not a month and a half after I started my
treatment, I was called in by the partners and they said, we think
you need to find opportunities outside the law firm. Apparently,
my lack of a team player attitude combined with my constant
hangovers and runny noses were being noticed even though I
thought I was doing a good job of hiding it.
Once I left the big firm and went out on my own, somehow I
was no longer able to get health insurance coverage because I had
a mental illness, and I couldn't even get basic coverage in the State
of Kansas where I lived because of that diagnosis.
But I was lucky, my parents had been able to foot the bill for
me. For the last few years, I have been out on my own, but I pay
over $400 a month just for my mental health coverage. Not
everybody has the resources I have.
Today I am recovering from depression. I have been in
recovery about 2.5 years. I just got married 3 weeks ago. Life is
going really great for me, but I do relapse. When I do, I know I am
not lazy or overly emotional or just feeling sorry for myself. That
is why I am so grateful and honored to be here today in the U.S.
House of Representatives.
Since I began speaking out about my depression just recently in
an effort to reduce the stigma, I have been amazed by the millions
of people who suffer from depression and the many people that I
meet. Just on the plane here this morning, someone saw me
working on my testimony and preparing, and they leaned over and
started to tell me their story of a friend who had suffered from
bipolar disorder and committed suicide.
In February of this year, I made my first trip to Washington,
D.C., with the Depression and Bipolar Support Alliance to
introduce their groundbreaking research paper, The State of
Depression in America. I had the honor of sharing a podium with
Mr. Mike Wallace and Representative Patrick Kennedy, and we,
all three, got to talk about the effect that serious mental illness has
had on our lives.
By removing the stigma of depression and helping people
recognize that depression is a real illness, we bring the shadowed
illness into the light of day and gave millions of people who are
now quietly suffering from this excruciatingly painful illness the
opportunity to seek treatment, treatment that we know can and
really does help. Thank you.
[The prepared statement of Jennifer L. Martin follows:]
PREPARED STATEMENT OF JENNIFER L. MARTIN, ATTORNEY, LAW
OFFICES OF JENNIFER L. MARTIN
I have always been aware of depression. My mother has
suffered from depression for as long as I can remember. Her sister,
my aunt, committed suicide in 1987 while suffering from
diagnosed, but untreated, bipolar disorder. I had even had small
bouts of depression growing up, but never believed I could suffer
from "mental illness."
I am an attorney in Kansas City, Missouri. I graduated at the
top of my class from the University of Missouri - Kansas City
School of Law.
Not long after graduating and beginning my dream job with a
prestigious Kansas City law firm, I realized something was wrong.
I didn't smile or laugh. Feelings of sadness and despair
inexplicably began to cascade over me. I had the perfect life (great
job, good friends, money), but the world seemed dark and
hopeless. The fact that I should have been happy made my misery
even worse.
As an associate at a big law firm, I was expected to work long
hours and weekends in order to meet the billable hour requirement,
but I was frequently chastised by the partners in my firm because I
was not hitting the bottom line and my attitude seemed poor. I was
told I didn't seem like "part of the team." Instead of billing hours
and being part of the team, though, I was living a secret life: a life
where I was abusing drugs and alcohol heavily and regularly in
order to ease the pain of my depression. Those drug and alcohol
binges were always followed by even darker days where I could
not even get out of bed.
I was really sick. But all I could think was that my employers
would assume I was weak or lazy. That I couldn't cut it in the
corporate world and surely wasn't smart enough to work for their
presitigous law firm. After all, smart people don't suffer from
mental illness.
I have learned, though, that depression is a real disease brought
on by a number of factors, including physical and chemical
changes in the brain. I have also learned that depression is a very
treatable illness. In November 2003, I began to receive counseling
and anti-depressant medication, which was covered by the group
health insurance plan at the firm. By then, though, it was too late
for my job. My lack of billable hours, combined with my
constantly runny nose and regular hangovers led the partners to
suggest that I look for "other opportunities outside the firm."
And, once I left the big firm and opened my own law practice,
I could no longer get mental health insurance coverage. I am
fortunate that I can afford to continue my treatment even without
insurance coverage. But what about the many people who cannot
afford the $400 a month I pay?
Today, I am recovering from depression. I have a successful
and growing law practice. I just got married 3 weeks ago. When I
relapse, which I do, I know that I am not "lazy" or "overly
emotional" or simply feeling sorry for myself. I have depression -
a real and serious illness that affects millions of Americans.
That is why I am so grateful and honored to be here today in
the U.S. House of Representatives. Since I began speaking out
about my depression in an effort to reduce the stigma of depression
for others, I have had been amazed by the millions of people I have
met who are living with and suffering from depression and other
mental disorders. In February of this year, I attended and spoke at
a press briefing for the Depression and Bipolar Support Alliance's
presentation of the groundbreaking paper: The State of Depression
in America. I even shared a podium with Mike Wallace and
Representative Patrick Kennedy.
By removing the stigma of depression a and helping people
recognize that depression is a real illness, we bring this shadowed
illness into the light of day and give millions of people who are
now quietly suffering from this excruciatingly painful illness the
opportunity to seek treatment - treatment that we know can and
does help.
MR. DEAL. Thank you.
Mr. Lamphere.
MR. LAMPHERE. Good morning, Mr. Chairman.
Congressman Stuckey from the great State of Georgia, who I
had the privilege of working for some 30 years ago, always told
me, if everything has been already said, when your time comes,
you better tell some good stories.
And that I will try to do within 5 minutes.
A couple years ago, I was suffering in the third year of what
would be characterized as the 99th percentile of severity of
depression, a serious case.
I had taken some 27, 28 medicines, none had worked, that 27,
28, did not include any cocktails or combinations of medicines
which would have boosted that number considerably. I have had
41 electric shock treatments which were effective until the last 10
or 12.
During all this, I had had a very supportive family and wife,
but things proved a little too much, and I lost my wife to divorce,
lost the family, lost the apartment, lost a good deal of my liquid
assets, lost my job. And finally, I was poured into a seat on the
Acela and taken down to Baltimore to Johns Hopkins.
Dr. DePaulo was there, and his predecessor, Paul McHugh, was
there, and I said, gentlemen, you got to pull out all the stops; I
don't care what the side effects are, pull them out.
And so they went back and got a class of drug that was over
35 years old called Parnate. It is an MAOI, rarely used, very hard
to find in the drug stores, even in New York. They combined it
with a drug that was less than 2 years old called Geodon that had
been invented not for depression but for hallucinations for
schizophrenics and for bipolar with hallucinations but had been
found by Johns Hopkins to be very, very effective in lower dosages
with depression. Thirty years old, and year and a half old.
The magic bullet was lithium and then Lamictal, which are
mood stabilizers with antidepressant qualities.
They handed over that lobster roll, and they said, enjoy,
because we think this is it. One day later, I felt better. I said let's
put some more lobster in that one, and we added a little bit more. I
felt that much better. I said, just keep going.
Sure enough, by the fourth or fifth day, I was back to my old
self. The story I want to leave you with is that I don't know if I
could have made it if I didn't have the support of my family, at
least until the end, or had the great wealth, and the perseverance,
but the money to have taken advantage of the finest doctors in this
country and finally find a teaching hospital that had the ingenuity
to find the combination that would bring my particular
predicament to a resolution.
My first point I want to make, Mr. Chairman, is, I honestly
believe this is a physical illness. It is not a mental illness. The
sooner we get that fact out in the educational system, in the
elementary grades, the high school grades, the more people will
understand.
Let me tell you why I think it is a physical illness and what
convinced me. I was having a great debate with one of the great
psychopharmacologists in New York, one of the finest, and I was
telling him, psychologically, that these people who went to work in
the morning looked like ants with briefcases on a treadmill. I said,
I don't know what they are laughing about. I don't know why they
take pleasure in sitting under a tree waiting in the shade. He said,
"Gil, this is not psychological. This is all physical." I said, "What
do you mean?" He said, "Well, you pay, I can't pay, and
healthcare is not going to pay, but why don't you go down to NYU
on 16th Street, and we will take some brain scans."
So I went down there, and they hooked up 25 electrodes to my
head, and it looked like a Christmas tree. It was bright red here. It
was beautiful blinking green here. It was blue and white here. We
got here, and I said, well, that is the overview, but where is the
detail? Because they said, that is the detail. It is black.
It is black. It is not working.
It is gone. I realized this is like charging a battery. You have
to have in the charging battery the right chemicals. You have to
have the right jumper cables. You have to have the right ignition,
and you have got to permeate that brain, which is in reference
today. I mean, the brain is designed to keep all this stuff out with
good reason, but you've got to get it through there.
So it takes a long time to cure this illness oftentimes.
We talk about some of the illnesses, high blood pressure and
diabetes and broken arms and Band-Aids. That is exactly what this
is.
It is a physical illness. Our panel before us can talk about a lot
of the environmental things that happen that we think are causative
that people are prone to. There is no question about that.
But what happens is, there is a snap. The brain goes black. I
think that is what we have got to get across today is it is a physical
illness. I will stop there, Mr. Chairman.
[The prepared statement of Gilbert H. Lamphere follows:]
PREPARED STATEMENT OF GILBERT H. LAMPHERE, MANAGING
DIRECTOR, LAMPHERE CAPITAL MANAGEMENT
Good Morning.
What is not on my resume is that I was severely depressed for
3 years. In fact, I was in the 99th percentile of severity. Life was
not worth living. I had the finest psychiatric and
psychopharmacological attention my fortunate wealth could
access. I had tried 27 medicines, not including combinations or
"cocktails" of them. I had 42 electric shock treatments to give me
some respite. I spent 75 weeks in and out of hospitals. I had a
loving wife that I lost to divorce 6 months prior to the end of my
successful treatment. I lost my family, I lost a good deal of my
assets, I lost my apartment, my job and profession, and my father
had a stroke.
Finally, when the last electric shock treatment had surprisingly
failed, I was gifted by a friend who said "get down to Johns
Hopkins". There I was told I would be lucky, given the severity
and duration of my illness, to regain 80% of normalcy, 80% of the
time. Since normal for me is more like 120% and a blessed hypo-
manic state, not manic, just happy and positive and energetic most
of the time, I remember telling Dr. Raymond DePaulo and Dr.
Paul McHugh, two of the outstanding psychiatrists in the world,
that 80% wasn't good enough and to pull out the stops and we'd
worry about side effects later. And so we did, because that's their
philosophy anyway-pull out the stops, think outside of the box, in
fact, collapse the box entirely.
So here I am today. Hopkins gave me a 30 year old, off
patented, class of depressant called Parnate (an MAOI), invented
in the early 70's, together with a 2 year old drug designed for
calming hallucinations in bipolar and schizophrenics, but which
Hopkins had discovered had powerful anti-depressant behavioral
effects at low dosages. Add to this mix, Lithium and Lamictal as
mood stabilizers with anti-depressant qualities and we had the
perfect cocktail.
I spent 12 weeks off and on at the hospital. My wife and
children never visited me for reason I still don't fully understand.
But it's very possible they had been advised not to get further
swept up in the vortex of an illness that eats marriages alive, until
we got the fine tuning right. And here we are two and a half years
later, and I feel better today than I ever remember in my life.
Against this backdrop, I have just 2 points to make today.
First, depression, bipolar and its related cousins are not mental
illnesses. They are physical illnesses, in both cause and treatment.
Allow me to explain. In the middle of my illness, Dr. Francis
Maas, one of New York's premier psycho-pharmacologists, told
me that part of my brain affecting emotion and cognitive behavior
was shut down, non functioning. I didn't believe him, since I
thought I was right in all my thinking, e.g., that nothing was
humorous, nothing gave pleasure, people going to work in the
morning was a repetitive tragedy like ants with no brains, etc. To
prove my point that my psychological insights were correct, I went
down to New York University Hospital were they hooked up my
head to 25 electrodes and for a half hour recoded my brain
functions. Then I looked at the printouts. It looked prettier than a
Christmas tree. My brain's right front was blinking red, my back
right was blinking green, my left back was blinking yellow and
blue and my front left was-holy smokes-it was black with
nothing going on.
Mental illness may have gotten its name by being lodged in the
brain, but at its core, it is not psychological (although counseling
can help after the brain is lit up enough) illness. It is a physical
illness like diabetes, high blood pressure or a broken arm, which
things like extreme stress triggers. There can be a predisposition,
or there can be not trigger at all. But suddenly, the physical
components of the brain, the electrons, the chemicals, the neurons,
the reuptakers, electrical charges don't work. And my point is, if
these disorders are thought of correctly, as physically caused and
physically cured, mental illness will be called a brain problem,
seen entirely differently and the stigma will melt away.
Incidentally, I find this insight to be most easily accepted by
people under the age of 60 and not so easily accepted by people
over 60 (mostly men) who feel if you are depressed you should
"pull yourself up by the bootstraps and regain the respect of your
wife, family and friends."
My second and last point today, is that finding the right
medicine or combination of medicines can often be a long drawn
out process. We seem to understand what we are trying to
stimulate in the brain, and medicines today are targeted, with
variations, to do that. But it is still hit and miss. We need to
manage patients expectations while, at the same time, give them
hope. But medicines sometime take a long time to fully work, and
sometime the patients grow discouraged that he/she is not getting
better and the doctor has moved the goal post another 100 yards
down the field.
In summary, we have a physical ailment, not psychological,
that is treated physically, and that is difficult to treat and takes
time. Thank God I have had my family for much of the time, and
my wealth to get me through. How other people without those two
ingredients struggle through the months and years of being without
human support, a job, money and the finest care in the United
States, is beyond me.
MR. DEAL. Thank you.
Mr. Earley.
MR. EARLEY. Thank you.
My name is Pete Earley. I am the author of, "Crazy: A
Father's Search Through America's Mental Health Madness." I
am also the proud father of a 27-year old son, Mike, who happens
to have a brain disorder.
His illness surfaced while he was in college in New York. His
brother called me one day in a panic and said, Mike has gone
crazy. I drove immediately to New York to get him from my home
in Virginia. It is difficult for me to tell you how painful it was to
ride home with him on that day.
During the 4-hour drive, his moods would shift within seconds,
crying at one moment, laughing at the next.
He said to me, "Father, how would you feel if someone you
loved killed himself?" I did what any parent would do. I drove
him to an emergency room.
I will never forget the intake nurse rolling her eyes as Mike
described how he was getting secret messages from God. We
waited for 4 hours. A doctor came in. He came in with his hands
up as if he were surrendering, and he said, "I can't help your son."
I said, "You haven't even looked at him." He said, "It doesn't
matter. Your son has told the nurse that he believes pills are
poison, and under Virginia law, I cannot treat anyone against their
will unless they are in an imminent danger to themselves or
someone else. Take him home and bring him back when he tries to
kill himself or kill you."
The next 48 hours, I watched my son sink into a mental abyss.
At one point, he had tinfoil wrapped around his head because he
was convinced the CIA was reading his thoughts. He slipped out
of my house. He broke into a stranger's house to take a bubble
bath. Five officers had to go in and wrestle him out.
They took him to a community treatment program. I arrived,
and the policeman outside said, unless you go in there and you tell
his psychiatrist that your son tried to kill you or kill himself, he
will not be admitted. I said, he hasn't done that. He said, it
doesn't matter, under the law, he has to be in imminent danger to
himself or others. So I went in, and I lied. My son was put in the
hospital. A few days later the police called me. My son had been
charged with two felonies, breaking and entering, and destruction
of property.
I was so frustrated. Our laws had stopped me from getting him
help. Now the laws wanted to punish him for a brain disorder.
As a father, there was little I could do. As a journalist, I could
investigate our system.
I quickly discovered that my Mike was not alone, because of
deinstitutionalization and our flawed system, there are 300,000
persons with severe mental disorders in our jails and prisons;
500,000 on probation; 700,000 go through our justice system every
year. The largest public mental facility in the United States is not a
hospital; it is the Los Angeles County jail.
Mike ended up being sentenced to 2 years of probation. He
completed treatment. He took his medication. Everyone told him
mental illnesses are chemical imbalances. They are biologically
based. The heart gets sick. The mind gets sick. There was
nothing for him to feel ashamed about, but when Mike told
potential employers he had a mental illness, his application was
rejected. My son has a college degree. He was refused a job
bagging groceries.
Six months after Mike's probation ended, he stopped taking his
medication. Because of my research, you would think I would be
smart enough to protect him. But I found myself again being
stymied. When I called the Fairfax County Mobile Crisis Unit for
help, the dispatcher asked if Mike were dangerous. Not yet, I said.
Then there is little we can do to help him.
I begged. I pleaded. I badgered my son to take his medicine.
But he refused, and he got worse.
A month ago, 4 weeks ago, his mother and I called the Fairfax
County Mobile Crisis Team. Mike had become violent. The
dispatcher told us, call the police. We don't answer calls if the
person is violent. I was afraid of the police. I was afraid they
would arrest him. I was afraid they would harm Mike or he would
harm them. So I called a social worker who is a close friend who
works with the police department. He got out of his bed at
midnight and came over. He insisted that the police call a sergeant
who is equipped with an electric stun gun, a taser. He was sent to
our house. Mike ended up being shot twice with the taser. He was
hog-tied, and once again, he was taken to a community center
instead of to the jail.
It took us 3 hours before we could see a doctor on duty.
Luckily, he agreed to hospitalize Mike. It took 3 more hours to
find a hospital with a vacant psychiatric bed, and they only agreed
to take my son after they learned he had insurance.
I live in one of the wealthiest counties in America. It can take
a person with a severe mental illness 6 months to get into a
treatment program, 2.7 years to get a case manager, 17.5 years to
get into subsidized housing. You have asked me what it is like to
be a parent with a person with a mental disorder. Each time my
son laughs, I wonder if he is taking his medication. Each time he
becomes sad, I wonder if he is heading for another relapse. Each
time the phone rings, I shudder. I live on an emotional cliff
waiting for the next breakdown. But I also cling to the hope that
Mike will find a way to control his illness, that science and therapy
will curb his disorder.
I try to focus on persons such as my panel members for
inspiration. I look to you for leadership, leadership that will bring
an end to the criminalization of persons with mental illnesses,
leadership that will bring about sensible reforms, leadership that
will enable Mike and other sons and daughters to get help and not
be turned away by a doctor when he says, bring him back when he
tries to kill himself or kill you. Thank you.
[The prepared statement of Pete Earley follows:]
PREPARED STATEMENT OF PETE EARLEY, WRITER
Summary: When journalist Pete Earley's adult son, Mike,
developed a major mental illness, his father rushed him to an
emergency room, but a doctor there refused to treat him, citing
civil rights laws that said Mike had to be an "imminent danger"
either to himself or others before he could be helped against his
will. Mike thought pills were poison. Earley was told to bring his
son back if he tried to kill himself or someone else. Forty-eight
hours later, Mike broke into an unoccupied house to take a bubble
bath during a psychotic episode. He was arrested and charged
with two felonies: breaking and entering, and destruction of
property. Earley was so outraged by a legal system that had
stopped his son from getting help and now wanted to punish him,
that he launched his own investigation into today's mental health
system. He eventually spent a year inside the Miami Dade County
jail in Florida where he followed several mentally ill prisoners
through the court system and into the community. He interviewed
correctional officers, judges, attorneys, mental health workers,
psychiatrists, the police, parents of persons with mental illnesses,
and consumers to learn why jails and prisons have become our
new mental asylums. He has published his findings in a nonfiction
book, CRAZY: A Father's Search Through America's Mental
Health Madness, which tells two stories. The first is his son's. The
second is an expose that explains how persons with mental
illnesses are being treated today. Earley concludes that we need to
take immediate steps to stop the criminalization of persons with
mental illnesses by: re-examining our nation's commitment laws,
establishing Crisis Intervention Training for the police, stopping
the closing of psychiatric hospital beds, and by improving
community based treatment services.
Thank you for inviting me to testify this morning about my
son, Mike, and what it feels like to be a parent or a loved one of a
person with a serious mental disorder. The quick answer is:
frustrating and heartbreaking. It is difficult enough to battle a
biological brain disorder. It is even more frustrating and more
heartbreaking when you encounter a mental health care system that
is callous and so deeply flawed that it throws up roadblocks to
recovery rather than offering a helping hand.
I have included an excerpt of my book, CRAZY: A Father's
Search Through America's Mental Health Madness, in this written
testimony. It will explain how we are turning persons with mental
disorders into criminals, how jails and prisons have become our
new mental asylums, and how we have gotten ourselves into this
tragic yet preventible mess.
Please read it. I live in one of the most affluent and
sophisticated suburbs in America in a Virginia county that prides
itself on having a model mental health care system, yet my son
ended-up being punished - rather than treated -- because of his
illness. Sadly, what happened to him is not an aberration.
There are 300,000 persons with severe mental illnesses
currently in our jails and prisons. Another 500,000 are on
probation. 700,000 go through the court system each year. Those
who aren't in jail, oftentimes are hidden away in repugnant
assisted living facilities. In Miami, 4500 persons with severe
illnesses are housed in 647 rooming houses. 397 of these slum
operations can't pass the state's minimum standards for boarding
homes, yet Florida continues to use them. We have closed down
the giant warehouses that were state mental asylums. But sadly, we
have not helped thousands of persons with severe disorders.
Instead, we have simply hidden them better.
As we have heard today, we have made significant advances in
developing medications and treatment. But none of these
promising scientific discoveries will matter if we cannot find a
reasonable and sensible way to deliver services to persons who
need help. As you read my son's story, you will discover that
getting help is often nearly impossible even when medical
solutions are available. Please remember two additional facts.
Mental disorders can strike anyone regardless of their race, creed,
political clout, or wealth. Bipolar disorder, severe depression and
schizophrenia are equal opportunity afflictions. If it happened to
my son and me, it can happen to your son, daughter, mother,
father, or sibling. Also understand that I am not alone in asking for
reform. Consider this note that was written by a mother who posted
it on my author's webpage (www.peteearley.com).
"Only a parent with a seriously mentally ill child, like yourself,
can understand the terror and desperation that we suffer. I live
constantly with the threat of my adult son's arrest or death (or
worse) and I have even harbored the horrible thought of taking
my own life and his on occasion to just end this never-ending
nightmare."
This mother is suffering, not only because of her son's mental
illness, but by her inability to get him meaningful help. Science
can give us the tools to unlock the brain's mysteries. But these
discoveries are useless if we can't develop a mental health care
system that can provide services and treatment. My son's story is a
testament that such a system does not exist today. What I found
during my year long investigation at the Miami Dade County jail is
a testament that such a system does not exist today. We need
Congress to fix these problems.
I applaud your committee for taking an important step today by
holding this hearing and calling attention to the need to end stigma.
But please don't stop here. I beg you. My son, Mike, has a mental
disorder that is trying to destroy him. He and I have no choice but
to put our trust in medical research. But whether or not Mike ends
up living on the street, eating out of a garbage can and being
attacked by teenage thugs wielding baseball bats - or living in a
rat infested assisted living facility -- or spending the rest of his life
locked in a jail cell for a crime that could have been prevented -
these are scenarios that are within our control.
Here is our story. I wrote it because I wanted mental illness to
take on a human face. It is my son's, but it is a face that can be
worn by thousands.
***** ***** *****
"How would you feel, Dad," Mike asked me, "if someone you
loved killed himself?"
My son's voice sounded weary. We were speeding south on
Interstate 95, just north of Baltimore, racing toward a Fairfax
County hospital. I had rushed to Manhattan earlier that morning to
get Mike after his older brother telephoned me in a panic. They
both lived in New York City. Mike had not slept in five days, had
been walking aimlessly throughout the city, and was about to lose
his job as a waiter. He was convinced God was sending him
encrypted messages.
Without warning, Mike burst into laughter. "Dog God!" Ha,
ha, ha. "God Dog! Get it?"
Just as quickly, he began to sob. Tears flowed down his cheeks.
I hadn't seen him in such pain since he was a boy and got smacked
in the scalp with a stick by a playmate. I had driven him to the
hospital and held his hand while they sewed stitches. He had been
five years old back then. Now he was twenty-three.
"Why are you crying?"
"I can't tell you because you will hate me forever."
My wife, Patti, already had alerted the emergency room at
Inova Fairfax Hospital. It's where we had taken him before when
he'd suffered a mental breakdown a year earlier. There had been
no warning signs, no known family history of mental illness. Mike
had recently graduated from a Brooklyn art school when one of his
friend's had showed up with him at my front door. He was
babbling about a girl named Jen, telling me that she was in danger,
that people were going to hurt her and that he needed to save her.
None of it made sense. I put him to bed, but he became paranoid
and when I finally was able to persuade him to go to the hospital,
security guards had to wrestle him down. That was when I had first
heard the term: bipolar disorder.
With anti-psychotic medication, time, and therapy, Mike had
become his old self again and returned to New York. I called every
Sunday but our recent conversations had been shorter than ususal.
Still, I'd not suspected that anything was wrong. The truth was that
both of us wanted desperately to believe the doctors had made a
mistake, that he had been misdiagnosed and his first episode had
been a fluke brought on by too much stress and too little sleep.
But then his brother called. Mike had not been taking his pills
and now he was acting crazy.
"Please take your medicine," I begged. I'd been trying to get
Mike to take Zyprexa, an anti-psychotic, since he'd first gotten into
my car.
"Pills are poison."
But moments later, he said: "Okay, I'll take your damn pill."
He reached for the water bottle that I'd given him, but he paused
before he slipped the tablet into his mouth and then dropped his
hand next to the car seat out of my view. Was that the pill?
I pressed harder on the gas pedal. I had to get him to the
hospital. He would be safe there. Its doctors would know what to
do.
***** ***** *****
I had no idea.
I had been a journalist for more than thirty years, a Washington
Post reporter, and the author of several nonfiction books about
crime and punishment and society, some award-winning, even
best-selling. I'd interviewed murderers and spies, judges and
prosecutors, defense attorneys and defendants. But I was always on
the outside looking in. I had no idea what it was like to be on the
inside looking out - until Mike was declared mentally ill.
Our manic trip from New York City to Fairfax in late August
2002 was the start of a harrowing journey. We were about to
plunge headlong into the maze of contradictions, disparities, and
catch-22s that is America's mental health system. But even that
was nothing compared with what happened when Mike, suffering
delusions, committed a crime and was arrested, thrusting us into a
judiciary that proved ill-equipped to handle madness.
Few of us worry that we'll wake up mentally ill. But what if
the phone rings, and it's someone telling you about your sister,
your daughter, your mother or your son? It happens more than you
think. Fifty-one million Americans have mental disorders. Nearly
all Americans have at least one relative who is mentally ill. Six-
and-a-half million Americans are so debilitated by mental illness
they are considered disabled.
Because of what happened to Mike, I have spent the last four
years examining our nation's mental health system from an
unusual perspective -- as a father struggling to help his son and as
a journalist investigating a larger story. What I have discovered
should outrage us. It should also scare you. Because the way we
treat the mentally ill today in America is a national disgrace and
mental illness is indiscriminate. Your education, your income, your
political clout, your zip code - none of it matters.
If it could happen to my family, it could happen to yours.
***** ***** *****
By the time we reached the hospital it was eight p.m. The
intake nurse rolled her eyes as Mike blabbed about God. She put us
in an examination room to wait. For the next two hours, no one
came to help us. Another hour passed and then, incredibly, another.
It was now midnight.
"I'm leaving," Mike declared.
I stepped out and flagged a nurse. An emergency room doctor
came in moments later. As he stepped toward Mike, the doctor
raised his arms as if surrendering to enemy troops. "There's not
going to be much I can do for you," he announced.
I thought: You haven't even examined him!
The doctor asked Mike: "Do you know who I am?"
"You're the witch doctor. Owe-ee-ow-ah-ah."
The doctor grinned. This isn't funny, I thought. I blurted
out: "He's been hospitalized before for bipolar disorder. He hasn't
been taking his medication."
But the doctor cut me short. "What's happened before this
moment really doesn't matter." He asked Mike to name the
president. Then had him count backwards from a hundred. "What
does the phrase 'Don't cry over spilled milk' mean?" Mike
answered each question and then added that God had made him
indestructible.
"Virginia law is very specific," the doctor explained.
"Unless a patient is in 'imminent danger to himself or to others,' I
cannot treat him unless he voluntarily agrees to be treated." Before
I could reply, he asked Mike, "Will you take medication?"
"I don't believe in your poisons. Can I leave now?"
"Yes," the doctor said. Mike leaped from the exam table
and hurried toward the exit.
"But he's not thinking clearly," I stammered.
The doctor shrugged. If Mike tired to kill himself or hurt
someone, he said, I could bring him back.
***** ***** *****
During the next twelve hours, I listened to Mike as he slipped
deeper and deeper into a mental abyss. Nothing can prepare a
parent for this horror - watching your child being tormented by his
own thoughts. In the morning, I decided to spike his breakfast
cereal with an antipsychotic medication. But Mike spied flecks of
the pill's pink shell floating in the milk and erupted. "Take me to
mom's house!" he yelled.
His mom is my ex-wife, who lives nearby. During the
drive, he became so furious at my badgering about his pills that he
jumped out before I could bring the car to a full stop. He ran the
rest of the way there.
Forty-eight hours later, the Fairfax County Police called. Mike
had been arrested. He'd gotten up before sunrise and gone outside.
Suddenly, he'd felt filthy, so dirty that he had to take a bath -
immediately. He shattered a glass patio door at a stranger's house
and darted in. Fortunately, the homeowners were away for the
weekend. After rummaging through the kitchen, Mike went
upstairs to take a bubble bath. Alerted by the home's clanging
burglar alarm, the Fairfax County Police sent a dog inside. It bit
into Mike's arm and dragged him down. But it still took six
officers to subdue him.
The police drove Mike to the Woodburn Center for
Community Mental Health, less than one mile from the Inova
emergency room where I'd first taken Mike for help and been
turned away. None of this would have happened if that damn
doctor had treated Mike, I thought as I turned into the Woodburn
parking lot.
***** ***** *****
Police Officer Vern Albert was standing at the entrance.
"Even though your son has broken into a house, unless you tell the
medical personnel inside that he's threatened to kill you, they
aren't going to treat him. We'll end up taking him to jail and you
don't want that. Not in his mental condition."
"But he hasn't threatened to kill me."
Albert shot me an exasperated look.
I went inside, and I lied. The police drove Mike to the
psychiatric ward at Inova Mount Vernon Hospital in Alexandria. I
followed. "How long does it take anti-psychotic medicines to
work?" I asked a nurse there.
She seemed surprised. "Just because your son is being
admitted doesn't mean he's going to be treated," she said. It was
against the law for doctors to force Mike to take anti-psychotic
medication, she explained, even though he was clearly psychotic.
An attorney called a few hours later and explained she had
been appointed to represent Mike. I was excited because I naively
thought she was going to help me get Mike treatment. But she
explained it was her job to get him released as quickly as possible
if that is what he wanted.
"But he's not thinking clearly!" I snapped. "He's sick."
"I'm just doing my job," she replied.
***** ***** *****
At a commitment hearing the next morning in the hospital,
Mike agreed to sign himself into treatment voluntarily.
"Why are you doing this?" the hearing officer asked.
"Because I'm having a relapse and my parents want me
somewhere safe."
I felt relieved. Now he could finally get help. That night, I
brought Mike a box of fast food chicken. I knew he wouldn't like
hospital food. It happened to be my fifty-first birthday and despite
his confused mental state, Mike remembered and handed me a
hand-drawn card. From nowhere, he mentioned a fishing trip to
South Dakota we'd taken. He'd been five and had wandered off
from the lake. The ground had given way at the edge of a ravine,
causing him to fall half-way down it before he'd grabbed a shrub
and stopped the fall. I'd climbed down and rescued him. Over
time, the story had grown. The gully had become a hundred-foot-
cliff. That was when he was little, and I was still his hero. We
laughed about the story and then I said: "Get well, son, that will be
the best birthday gift ever."
The next morning, the hospital psychiatrist called. A pill
had been found on the floor in Mike's room. He'd pretended to
take it and then spit it out. I confronted him that night. "I keep
thinking this is all a dream," he said. "I'll just wake up and it didn't
happen."
I touched his hand. "This is real. You've got to take your
medication."
Dr. James F. Dee called the next morning. Mike was taking
his pills, but there was a new problem. Our insurance company
wanted Dr. Dee to discharge Mike later that day. Dr. Dee didn't
believe Mike was ready, but because Mike hadn't tried to kill
himself and was now taking his pills, the insurance company
wanted him out.
I called the insurance company, but the woman there had
no sympathy. "Your son can recover at home."
"But he's not stable!" I said, and then I lost it and I did
something that I had never done before as a journalist. I warned
her that I was a former Post reporter and was friends with Mike
Wallace of 60 Minutes. If her company forced Mike out, I'd notify
the Post. I'd call Wallace. As I put down the receiver, I realized
that since Mike's breakdown, I had lied to get him hospitalized and
now I was violating my professional ethics to keep him there.
Dr. Dee telephoned that afternoon and said the insurance
company had backed off. Mike could stay in the hospital as long as
necessary. I learned later that a girl, who had stabbed herself in the
neck with a pencil, had been released that day. Within two hours,
she had disappeared, leaving her parents to drive the streets.
Mike slowly got better and we arranged for him to enter a
community mental health day treatment program in Reston. I
began to feel optimistic. And then the phone rang.
"I'm Detective V.O. Armel," the caller said. "Two felony
warrants have been issued for your son's arrest." Mike had been
charged with "intentionally destroying, defacing, and damaging
property in excess of $100" and "breaking and entering...with the
intent to commit larceny." Both carried up to $10,000 in fines and
five year prison terms.
"But my son's mentally ill," I protested. "He didn't know
what he was doing. And I tried to get him help in a hospital before
this happened."
"Just because your son is mentally ill doesn't mean he can't be
charged with breaking the law."
***** ***** *****
What happened to Mike was not uncommon. A major shift
has occurred in America.
In 1955, some 560,000 Americans were patients in state
mental hospitals. Between 1955 and 2000, our nation's population
increased from 166 million to 276 million. If you took the patient-
per-capita ratio that existed in 1955 and extrapolated it out based
on the new population, you'd expect to find 930,000 patients in
mental hospitals today. But there are fewer than 55,000. Where
are the others? More than 300,000 are in jails and prisons. Another
half million are on court-ordered probation. The largest public
facilities for the mentally ill are not hospitals. They are jails and
prisons. They have become our new asylums.
Why? I decided to go to Miami, Florida to find out. I chose it
for two reasons. I didn't want to risk irritating local officials in
Fairfax by writing about the jail system here since they would be in
charge of deciding Mike's fate. I also had been told that Miami has
a higher percentage of mentally ill residents than any other major
city. Three percent of the population in most American cities are
mentally ill. In Miami, it's nine percent. Besides the normal three
percent, another three percent come for the warm weather and
another three because of Fidel Castro. In 1980, he released patients
in Cuba's mental hospitals into the stream of refugees fleeing to
Florida from the port of Mariel.
Miami has been struggling with mixed success to deal with
its mentally ill. It proved representative. I could just as easily have
chosen Chicago, Los Angeles, Philadelphia or Washington D.C.
Miami's jail system is the fourth largest in the nation. Sixteen
percent of its inmates have severe mental disorders. The craziest
are housed on the ninth floor in the downtown jail in "suicide
watch" cells with plexiglass front walls so officers can keep an eye
on them.
Dr. Joseph Poitier, the jail's psychiatrist, took me on his
morning rounds. As we entered C wing, I gagged. The air stunk. It
was a putrefied scent, a blending of urine, expectorant,
perspiration, excrement, blood, flatulence, and dried and discarded
jailhouse food. I listened to the sounds. Toilets flushed. Prisoners
hacked, coughed, groaned. Correctional officers laughed and
yelled commands. Leg chains click-clacked against the hard
surface as prisoners arrived. These were typical jail noises. When I
listened closer, I heard the asylum sounds. A prisoner sobbing
uncontrollably, another moaning, a third screaming.
Thud, thud, thud.. Then faster. Thudthudthud. Then louder.
THUD. THUD. THUD. An inmate was banging his forehead
against a glass cell front.
The inmates peering out at me in the first cells were naked.
There was nothing in their cells except a combination sink and
toilet. Nothing. No television, no radio, no magazine, no place to
sleep, no chair. Nothing. Because of a design flaw, the temperature
in each cell hovered in the 60s. The inmates were trembling in the
frigid air. A few rocked back in forth on their heels, mumbling.
Some had urinated and defecated on the floor. Most stood at their
cell fronts looking out at the officers. They had blank expressions,
hollow eyes. I had never seen such bleak conditions and I have
been in hundreds of jails and prisons as a reporter.
"What I do here is triage," Dr. Poitier explained. There is no
meaningful treatment. As we shifted from cell to cell, he spent his
rounds trying to persuade prisoners to take medication. They had
arrived on C wing with no medical records. Many were homeless.
Most of their families have given up on them. Psychotic inmates
could spend months here. Others would be released only to be
arrested within hours on different charges related to their illnesses,
such as trespassing or being a public nuisance. If they were
charged with a felony, they would eventually be sent to one of
Florida's three forensic hospitals. But there was a long waiting list
and even then, they were not treated there. Instead, they would be
given medicine until they were judged "competent" for trial and
returned to Miami. Sometimes it could take five or six trips
between the jail and hospital before they were stable enough to
appear in court.
We paused outside a cell designed for two men, but holding
six. A prisoner was lying on the floor next to a toilet that another
was urinating in. Because the splash was hitting the inmate's face,
Dr. Poitier was concerned. He asked a prisoner to roust the man to
make certain he was sleeping and not dead. The inmate raised his
head, grunted, and rolled over. As we were about to move on, I
notice movement underneath a steel bunk. Dropping to my knee, I
peered through the smudged glass wall. A man was curled up
there. He had schizophrenia, which can cause hallucinations and
confused thinking, and was chewing on day-old orange peels. He
smiled and waved.
I checked my watch after we finished the morning rounds.
Dr. Poitier had spoken with or visibly observed ninety-two
inmates. His rounds had taken 19 � minutes. That was an average
of 12.7 seconds per prisoner.
"A lot of people think someone who is mentally ill is going
to get help if they are put in jail," Dr. Poitier said. "But the truth is
we don't help many people here... we can't."
A man with bipolar disorder, which causes rapid mood
swings, had been put in jail. For twenty-five years, he'd taken his
medication and lived an ordinary life. But then he'd lost his job
and couldn't afford his pills. He'd attacked his father and been
arrested. In jail, he jumped from a top bunk headfirst into the floor,
snapping his neck. Now, he was a paraplegic.
"Jails are not hospitals," Dr. Poitier said. "Mentally ill people
belong in hospitals, not here."
That night I woke up sweating. I had dreamed I was with Dr.
Poitier making rounds and had spied an inmate under a bunk.
When I bent down to see, the inmate eating the old orange peel
was Mike.
***** ***** *****
In a well-schooled Virginia drawl, Fairfax defense attorney
Andrew Kersey assured us that he'd be able to cut a plea bargain
for Mike. Because my son had no previous criminal record, was
clearly psychotic when he broke into the house, and was now in a
treatment program, Kersey felt confident the Fairfax County
prosecutor assigned the case would reduce the two felony charges
to misdemeanors. Mike would be given a year of probation. It
would be an open-and-shut matter.
On the morning of his court appearance, I asked Mike if he
understood what was happening. He didn't. He was still groggy
from medication, but he was eager to go to court. When I asked
why, he replied: "I get to wear my new suit!" Before he'd become
manic, he'd bought a suit because he was going to interview for a
new job. This would be the first time he had worn it.
"There's a problem," Kersey announced moments before the
hearing. "Our plea deal is off." He explained that the assistant
prosecutor had never cleared the deal with the homeowners and
when they heard about it this morning, the wife had gotten angry.
"She wants your son put in jail or an institution," Kersey
explained. "The victims are demanding he plead guilty to at least
one felony charge."
"But a felony will ruin Mike's future." His college degree was
in a profession that required a Virginia state license. Felons were
ineligible.
Kersey gave us a sympathetic look and said: "What's odd is the
judge will still give Mike the exact same sentence." If Mike
pleaded guilty to two misdemeanors, he'd get a year of probation.
If he were forced to plead guilty to a felony, he would still get a
year of probation.
Kersey wasn't certain if the wife understood this, so he
ducked back into the courtroom to talk to her, leaving us to wait in
the hallway. I checked my watch. Six minutes to go before court
started. A few moments later, Kersey reappeared. The husband
didn't care but the wife wanted Mike punished. Before Mike took
his bubble bath, he broke a family heirloom dish, turned photos of
her children face down on the mantel, drank some booze and left
the bathwater running in the house causing extensive damage.
Most of all, Kersey said, the wife felt violated. Mike had taken a
bath in her teenager daughter's bathroom. That's creepy. Why had
he chose their house? What if he came back? She was so unnerved
that she was pressuring her husband to sell their house and move
away.
"What she really wants is for your son to be put in prison,"
Kersey said.
"But he's mentally ill. Bipolar disorder is a chemical brain
disorder. It's like cancer. You get it. You don't do anything to get
it. It just happens to you," I said.
Kersey nodded at his watch. Four minutes. He explained our
options. If Mike pleaded guilty to a felony, the case would be over.
If he pleaded not guilty, the judge would set a trial date. But a jury
would probably find Mike guilty because he'd been arrested inside
the house. It might send him to prison. There was a third choice.
Mike could plead "not guilty by reason of insanity" but if we won,
he would not be turned loose. He would be taken directly from the
courtroom to the jail to wait for a bed in a Virginia forensic
hospital. Mike could spend weeks waiting and there would be no
way to know when he might be released after he was sent to the
hospital. He'd also be identified in court records forever as being
innocent, but insane.
"We'd win in court," Kersey said, "but your son would
lose."
Three minutes and ticking. Three minutes to decide which
was the lesser of three punishments that, as Mike's father, I
believed were all unfair.
"Offer them money," I said. Kersey said no. The wife was
legitimately afraid. She felt twice victimized. Mike had broken into
her house. The prosecutor had not consulted her about the plea
deal. She was the victim, not Mike, and in today's get-tough-on-
crime environment, no elected prosecutor wanted to appear soft on
crime.
Two minutes.
"What do you want to do?" Kersey asked.
I didn't know. How could this be happening? Kersey
suddenly had another idea. He'd ask Detective Armel for help. The
police often bond with victims. He rushed back into the courtroom.
Mike and I waited. He didn't have any idea what was
happening. When Kersey rejoined us, he shook his head. Nothing
had changed. Detective Armel had explained that Mike's
punishment would be the same, but it hadn't mattered to the wife.
We were out of time. Mike and I followed Kersey into the
courtroom. I noticed Detective Armel was still speaking to the
victims. I didn't know what to tell Kersey. Which was better?
Pleading guilty to a felony and having Mike marked for life?
Risking a trial and having him found guilty? Or fighting the
charges by pleading that Mike was insane? I'd been given less than
ten minutes to make a decision that was going to forever alter my
son's future.
The judge entered. The clerk began reading the calendar of
cases. Mike's name was third on the list. For the first time in my
life, I was literally frozen with indecision. I looked at Mike. I
looked at Kersey. He needed an answer.
At that moment, I saw Detective Armel walk down the
aisle to talk to the prosecutor. I glanced at the husband and wife.
She was sobbing. But I felt no sympathy.
Kersey hurried up to Armel. The clerk called Mike's name.
The prosecutor said, "Judge, we'd like to continue this case."
The judge agreed to put it aside for three months.
Kersey hustled us out into the hall. Detective Armel had won
us more time by telling the wife that Kersey might be able to come
up with an offer that would be better for them than one year of
probation.
The homeowners and Armel exited the courtroom. None
looked at us.
"Mike," I said, "do you see those people walking there?"
He looked and had no idea who they were.
***** ***** *****
Dorothea L. Dix visited a Boston jail to teach a Bible class in
the 1800s and discovered mentally ill prisoners had no heat despite
freezing temperatures. The jailer said: "The insane don't need
heat." Dix spent the next two decades exposing how "lunatics"
were being abused in jails and prisons. She would be credited with
persuading thirty states to build asylums for treating the mentally
ill, rather than punishing them because they were sick.
By 1900, every state had a mental institution, but conditions in
them were wretched. Patients were often committed by relatives.
The system was abused and the hospitals became a catch-all for
society's disposables - the elderly, the deaf, the blind, and the
poor. On May 6, 1946, Life magazine published a story entitled:
Bedlam: Most U.S. Mental Hospitals Are a Shame and a Disgrace.
It began by describing a mental patient being tortured to death by
the staff. Other investigative stories compared conditions in state
mental hospitals to Nazi concentration camps.
In 1963, President John F. Kennedy asked Congress to spend
three billion dollars to replace the nation's cruel state hospital
system with a network of Community Mental Health Centers. The
discovery of promising new antipsychotic drugs made it possible
for severely mentally ill patients to return to their hometowns and
live outside locked wards.
It was a grand plan, but Kennedy was assassinated, the
Vietnam war escalated, Congress got ensnared in Watergate, and
the mentally ill were forgotten. In the 1980s, civil rights attorneys
began filing class actions lawsuits to close down horrific state
hospitals. They won a slew of precedent setting cases. The police
could no longer arrest someone just because they were mentally ill;
a psychotic person could not be locked indefinitely against their
will in a hospital; they couldn't be forced to take medication or
undergo forced treatments, such as electric shock or lobotomies.
The U.S. Supreme Court ruled that the mentally ill were entitled to
the same due process protections as suspects in criminal trials.
Under pressure, Congress agreed to make the mentally ill eligible
for Medicaid and Medicare, but only if they were not living in a
state hospital. It was Congress then, that gave state legislators a
way out. Afraid of class action lawsuits and mounting public
pressure to do something about the asylums, state legislators began
boarding up mental hospitals and discharging patients. This
massive exodus was called "deinstitutionalization."
And what happened to the mentally ill?
In most states, patients were released without any effort being
made to link them to community services - if, in fact, there were
any. President Kennedy's promise of three billion dollars was a
cruel lie. There were no network of community treatment centers
and those that had been built were never intended to help deeply
disturbed patients. Chronically mentally ill patients began
appearing on street corners. By the 1990s, there were so many
being locked up on minor charges that a word emerged: trans-
institutionalization, bureaucratize for the "transfer" of the mentally
ill from hospitals into jails.
Like most states, Florida made no preparations before it began
dumping patients. But eventually, it found homes for most in
"assisted living facilities" - cheap hotels and boarding houses.
Today, there are 4,500 mentally ill patients living in 650 "ALFs"
in Miami. Almost 400 of these ALFs fail the state's minimum
standards for boarding homes. They are unsanitary, unsafe, and, in
most cases, wretched places. "I wouldn't put my dog in this
house," a Miami police officer told me when we toured an ALF.
But Florida allows these substandard homes to operate because
there is no where else to house the mentally ill.
Florida's dreadful state mental hospitals had been closed by
deinstitutionalization, but the lives of the mentally ill hadn't really
gotten better. The state had simply scattered them and hidden them
better in ALFs.
I decided to check the Washington D.C. metro area. Since
1955, the District has lost 92 percent of its public mental hospital
beds; Maryland has lost 86 percent, and Virginia: 84 percent.
Although private hospitals have opened some wards, there are only
98 beds for every 100,000 mentally ill people in the metro area,
creating a staggering backlog. As in Florida, the number of
mentally ill in local jails has mushroomed. Today, 2,551 inmates in
Virginia state facilities are considered severely mentally ill.
Another 3,330 prisoners in Maryland - fourteen percent of the
state's inmate population - are mentally ill. And an whopping 33%
of the District's inmate population require mental health services.
***** ***** *****
In a letter to the homeowners, our attorney said Mike would
meet a much tougher set of restrictions if they would allow him to
plead guilty to misdemeanors. Instead of serving a year of
probation, he'd serve two. He'd stay in the day treatment program,
continue seeing a psychiatrist after he was discharged, submit to
blood tests to prove he was taking his bipolar medicine. Kersey
would obtain a restraining order against Mike that would forbid
him from coming near their home. He reminded them that Mike
had a clean record, was truly remorseful, and that he'd chosen their
house at random. "This should do it," he said confidently.
But a few weeks later, he received the couple's harshly-worded
response. They wanted Mike in jail. They insisted he plead guilty
to a felony. If anyone deserved sympathy, they added, it was them.
"You need to prepare Mike," Kersey warned. "He's going
to become a felon."
Mike was wearing his new suit again when we returned to
court. Just before it was about to start, Kersey came rushing up.
The victims had telephoned the prosecutor's office the
night before and asked for a continuance. The husband was out-of-
town on a business trip and the wife didn't want to come to court
alone. But the prosecutor had turned them down. "If the wife isn't
here, there's a chance the prosecutor will let your son plead to the
two misdemeanors," Kersey said. He'd shown the prosecutor the
list of additional restrictions that Mike was willing to accept.
We stepped inside. Every time I heard the courtroom doors
open behind me, I turned to see if it were the wife. The judge
entered. The wife still hadn't. The clerk began to call the docket.
When he reached Mike's case, I heard the door swing open and felt
betrayed. I assumed she had been hiding, mustering her courage,
but when I glanced around, it was a stranger. Still, none of us knew
what if the prosecutor would accept our offer.
"Your honor," he said, "we have reached an agreement in
this matter."
In fewer than three minutes, it was over. Mike had pleaded
guilty to two misdemeanors and had been placed on two years of
probation.
As we left the courtroom, I thought about the wife. I had
honestly come to despise her. But now, I wondered how I would
have felt if I had come home and discovered a madman had broken
through my plate glass patio door. How would I have reacted if
he'd taken a bubble bath in my teenage daughter's tub? What if I
had become so distraught that I had felt compelled to put my house
on the market? Would I have acted like she had? Or, would I have
showed compassion? Because it was Mike, the answer had seemed
so obvious. But, sadly, when I stripped away his face and replaced
it with the menacing look of a deranged stranger, I realized I might
have reacted much as she had. I felt conflicted. The victims had not
had the knowledge that I now had about mental illness. But I
would not have had that information either had it not been for
Mike's unexpected plight. I began to see the wife differently. I
began to see her as the reader whom I most wanted to reach with
my book, the audience that I most needed to persuade. I was also
forced to realize that she truly was a victim. And it was Mike who
had victimized her. I only hoped that someday she would come to
see that Mike had been a victim too.
***** ***** *****
Mike kept the plea deal. He completed the day treatment
program, stayed on his medication, and began looking for a job.
He'd been told being mentally ill was nothing to be ashamed about
because it was a chemical imbalance. But when he mentioned that
he had bipolar disorder, his job applications were rejected. Mike
had a college degree, but our neighborhood Giant food store turned
him down for a job bagging groceries. A sympathetic human
relations director told him not to be so forthcoming. "If I
knowingly hire someone who is mentally ill and you end up
hurting someone on the job, that person can sue me and the
company. No one is going to hire you if you tell them the truth."
Mental illness, we'd discovered, carried its own life sentence.
A temp service finally found Mike menial work and he
eventually became a full-time employee. Proud of his new
independence, Mike invited me to lunch. We met at a steak house
and sat outside because it was a warm afternoon. He had come a
long way from that panicky day when we had raced to the hospital.
Our food came and he recalled how I'd brought him fried chicken
in the hospital. We talked again about the fishing story -- the one
about him falling down a South Dakota cliff and me climbing
down to rescue him.
I watched him eat his steak. He was a handsome man. Tests
showed his IQ was higher than mine. I realized how fortunate we
both had been. He had recovered. He hadn't spent time in jail or
been marked for life as a felon. He was doing well on his
medication. His bipolar disorder was in check.
I thought about people whom I'd met in Miami while I was
doing research inside and outside the jail. Judy Robinson's
mentally ill son had been in-and-out of jail forty times. Another
mother's son had lived homeless on the streets for nine years -
despite her attempts to get him help. She had driven by him rooting
through garbage cans every morning on her way to work and had
been helpless under the law to intervene. How ironic, that the civil
rights laws that had been passed to prevent the mentally ill from
being abused in state hospitals were now being cited to keep them
from getting help until they hurt themselves or someone else and
ended up in jail. I'd met a woman in Miami the same age as Mike.
Her mother had gone to court several times to force her into a
hospital, but doctors had repeatedly discharged her because her life
wasn't in imminent danger. She had been twice gang raped while
psychotic on Miami's mean streets. Another woman, Alice Ann
Collyer, had shoved an elderly bystander at a bus stop during a
delusional moment. Because she was considered dangerous,
prosecutors had transferred her back-and-forth between the Miami
jail and a state forensic hospital for three years just to keep her off
the streets. Three years in jail without ever being convicted of a
crime. Miami's treatment centers were overwhelmed and
inadequate. Its system badly broken. As Dr. Poitier had warned, we
had gone backward. We now treat the mentally ill in America just
as we did in the 1830s when they sat in freezing jail cells put there
because there is no where else for them to go.
I had begun my research because I wanted to save my son. But
I now realized that I had actually been searching for a way to save
both of us. I had been trying to learn how a parent comes to accept
his child's mental illness. So what had I learned, not as Pete Earley
the reporter, but Pete Earley, the father? Several quiet truths. Life
is often unfair and nothing in life is ever guaranteed. There was a
slim chance Mike would never have a relapse. But there was a
better chance that he would stop taking his medicine because he
would become convinced that he no longer needed it. His illness
was not over because I was writing the final chapter of my book.
"You know what your problem is dad?" Mike said, as if he
were reading my thoughts. "You worry too much. Just eat your
steak and enjoy this lovely day." Everything is going to work out
fine for me, you'll see."
It was the blind optimism of youth talking. And yet, Mike was
right. At that moment, everything was fine. My son was thinking
clearly. He had a job, was making plans for his future, and seemed
happy.
Which led me to another lesson.
Mental illness is a cruel disease. No one knows who it might
strike or why. There is no known cure. It lasts forever. My son
Mike has it. And because he is sick, he will always be dancing on
the edge of a cliff. I cannot keep him from falling. I cannot protect
him from its viciousness. All I can do is stand next to him on that
ravine, always ready to extend my hand. All I can do is to promise
that I will never abandon him.
I took a bite of my steak and it tasted better than any I had ever
eaten. I understood why. The sun was warm on my face and I was
a most fortunate man. I was a proud father. Mike was laughing. He
was safe.
I had my son back. At least for now.
MR. DEAL. I want to thank all of you for the very courageous
testimony we have heard, very heart-wrenching, quite frankly.
Mr. Earley, as someone who has been a former juvenile court
judge myself, I can empathize with the situation that a parent is in.
Unfortunately, these diseases as we have heard from your
testimony and as we have heard from the expert panel earlier, the
onset many times is at the age beyond which the law says that they
are independent and therefore not subject to the control of parents.
Yet parents are the ones who feel the impact of these situations as
you have so graphically described.
I guess I would ask some general questions of the three of you,
and you come at this issue, quite frankly, from sort of different
directions, one being the parent and the other two being the victims
themselves or the individuals suffering from the problem.
Looking back on your situations, I suppose, Ms. Martin and
Mr. Lamphere, what could have been done earlier in your personal
situations that would have made a difference in the direction that
your lives took? Who and what would have been the resources
that could have been that difference?
Very general question. Ms. Martin, I will start with you.
MS. MARTIN. I think the way I could have been most helped
is, my family knew I was suffering from depression, but my Mom
especially, having suffered from it herself, was of the attitude, you
don't talk about it, you don't tell people about it, you keep it in the
family, and you don't get help because therapy is for other people,
therapy is for people who are weak, therapy is for people who are
whiny. If I had been aware of the benefits of treatment and had
someone talk to me about how there shouldn't be a stigma with
mental illness, it would have prompted me to get help a lot sooner
instead of taking it to the point where I lost a job and I lost income
and I lost a lot of self respect. So I think just an initial almost an
intervention of someone in my family who knew what was going
on to say, you need to get help and you need to get it now and it is
okay to get that help, it is okay to admit that you have a mental
illness.
MR. DEAL. Mr. Lamphere, you appear to be the rugged
individual here who tried to do it on your own. Is that pretty much
the course that you took of trying to do it yourself, and if not, what
resources did you utilize?
MR. LAMPHERE. My wife was right there until almost the very
end. I would say this, there are general practitioners who can
dispense antidepressants, and then there are psychiatrists who can
dispense them. Then there are psychiatrists, who have depressive
experience, and then there are psychopharmacologists, and then
you begin to get into teaching level hospitals, and then you can get
into real cutting-edge teaching.
This is so complicated, to find the right medicine. You cannot
just take Wellbutrin, I am not picking on Wellbutrin, off the shelf
and think that that is going to work. You can't just take Paxil next
and think that this is going to work.
You are looking for a witch doctor is what you are looking for.
You have got to get far down the line to someone who truly
understands the combination of drugs that are apt to bring you up.
I think that is where I would have done it differently. I don't
think I would have started here and said, oh, these people are
experts, or that the drugs are experts in and of themselves.
It is the utilization of the cocktail. You are creating the
cocktail, and you need to have the cutting-edge people.
On top of that, I would only add one other point. The
treatment of adolescents is a whole other area of specialization. So
what I am talking about is adult. But don't forget, these age
groups over here are real specialties. If you are dealing with a son
or a daughter in that age group, you have got to find the expert
there, too.
MR. DEAL. Mr. Earley.
MR. EARLEY. Well, Mr. Chairman, when my son starts to
become psychotic, he thinks he is fantastic. Expecting someone
with bipolar disorder or schizophrenia to treat themselves is like
asking someone who has 2 broken legs to run a marathon. The
National Institute of Mental Health has done a number of studies
that show that one of the first parts of the brain that starts to go
bad, if you want to use that terminology, is the part that makes you
aware that you need help, which is why it is so frustrating for
parents and others who love mentally ill persons to try to get them
help when they don't recognize they need it.
MR. DEAL. I want to thank all of you.
Ms. Baldwin, you are recognized for questions.
MS. BALDWIN. Thank you, Mr. Chairman.
And thank you all for very powerful testimony. You all point
out so powerfully how important it is to educate.
Mr. Earley, I wanted to explore further one of the main issues
that you had testified about, I remember when I was a State
legislator, having our State legislature tackle the issue of what in
Wisconsin we call the fifth standard, dealing with the issue of
when you have a patient who does not want treatment, as you just
described, under what circumstances treatment can be administered
against that patient's will and direction.
And I remember that the debate was fascinating, and it is one
that is usually governed at the State level, but I would be interested
in hearing more about your thoughts of where you would like to
see the State of Virginia go. In Wisconsin, we ultimately created a
fifth standard that you could get around the imminent risk of
harming oneself or another person. But I remember the very
powerful testimony of a man whose wife was mentally ill, and it
never manifested itself in any type of dangerous activity in terms
of life-threatening to herself or to others. But she wandered and
was homeless, and it was just devastating for him to see her in that
condition. So dangerousness wasn't an element that would have
necessarily gotten care to her. I wonder if you have thoughts,
through both Mike's experience and also your reporting on this, of
where you believe the State ought to go in terms of getting greater
access to treatment for people in your son's condition?
MR. EARLEY. Thank you. You know, I love my son. I want to
protect his civil rights. But I don't think it does any of us any good
to send someone out in his kind of condition when it is obvious he
is not thinking clearly. I think you have to take a look at why these
stringent commitment laws were passed. In the 1960s through the
1980s, we had these horrific institutions. They were absolutely
horrible. They were compared to Nazi concentration camps, and
civil rights lawyers came in and basically said, we are going to
make it impossible to commit someone to those horrible places.
They have done that.
I don't believe we should trample civil rights, but I think we
need to take another look at those laws and try to bring parents and
doctors in and try to remove this imminent danger clause.
Treatment today is different than it was. We know more. No one
volunteers to be schizophrenic.
My son has been forced into a hospital twice. Each time, it has
been less than 2 weeks. He got his medication. He thanked me for
taking him in. You know, we have protections in place with
advocacy funded by Congress to make sure people don't get
abused and put away. Does it happen? Absolutely, look at the
D.C. situation. It is horrific. People are being abused. But, right
now, people are being abused in jails and prisons. Right now, in
Miami, 4,500 people are being housed in assisted living slums by
the State that don't even pass minimum standards. So we have
closed down these institutions, but we have just hidden the people
better.
So I think we need to look at the commitment. I think we need
to be more humane about that. I will be real brief here. What you
just mentioned is what I found in Miami: 455 people with serious
mental illnesses, homeless on the street, most of them committed
misdemeanors. What happens? Because they are not dangerous,
they go into jail and are held, and they are released, 40, 50 times a
year. That is ridiculous.
MS. BALDWIN. Let me ask your opinion on another innovation
that I had heard discussed, I don't know of any location where this
might actually be law, but there was at one point during our debate
in Wisconsin the proposal of allowing somebody with a mental
illness to essentially, when treated, issue an advanced directive and
basically be able to say that, if at some point in the future I have a
reoccurrence and I am not able to make my own decisions, at that
point, use the advanced directive as permission to treat me.
Is that something that you think would be worthy of
exploration? Would that have served--would your son, for
example, at a point in time when he is under treatment and feeling
better, be willing to sign something like that?
MR. EARLEY. You know, I have looked at that, and you have a
mixed result. In some States, they are not accepted, and in some
States, what you will run into is a doctor like I ran into at a hospital
that basically will turn to someone and say, you signed this, but
how do you feel now? They will say I am fine. They won't abide
by it. So I looked into that in Virginia, and I found mixed results.
MS. BALDWIN. Thank you.
Madam Chairman, I yield back.
MS. MYRICK. [Presiding.] I want to thank all of you again for
coming and taking your time.
Mrs. Earley's birthday is today, and I want to thank you, say
thank you, because she took time from her birthday to be here with
us. Thank you.
MR. RUSH. I do have a question.
MS. MYRICK. I am sorry, Mr. Rush, forgive me.
MR. RUSH. That is quite all right.
Ms. Martin, you indicated in your testimony that one of your
remedies or one of the things that you attempted to do, you found
yourself falling into I guess you implied there was a use of
narcotics or drugs, different type of drugs.
And I really feel as though that is a part of the drug problem
across this Nation that doesn't get addressed. Again, we are quick
to criminalize those who have addictive behaviors rather than
really try to understand what are the causes of it. And in your
testimony, you indicated that your mental condition, your illness,
was the basis of your drug abuse; is that correct? Could you
elaborate somewhat on that, please, that particular aspect of it?
MS. MARTIN. Certainly, certainly, Mr. Rush. It was the basis
of my drug problem. I had never touched any kind of illegal drug
until I was 22 years old. I had just finished my first year in law
school, and my depression that I kind of dealt with off and on and
had issues with was getting stronger and was pushing more and
more forward. Suddenly, I had friends and I knew people who
were using drugs. I tried them for the first time and was happy for
the first time ever. I remember thinking, wow, this is amazing.
Now I know why people do drugs.
For me, it wasn't that physical addiction that people talk about.
When I stopped using drugs, I never went through a withdrawal or
anything like that. I did it completely as self-medication to feel
better.
MR. RUSH. I kind of think that that is--you know, I have a son
who is a recovering alcoholic, and his diagnosis, manic, manic
depressive. And he invariably at certain points in time I think has
been clean now for a couple, about 2, 2.5 years. But, he was
self-medicating through alcohol abuse. And it seems to me that,
particularly in poor communities, that it is much more prevalent
when we, because they don't have access to preventative or
diagnostic or clinical services and professional help, that that is a
part of the problem in terms of drug abuse and also alcohol or
alcohol abuse and using illegal drugs.
And it seems as though our Nation just doesn't want to look at
that particular aspect. Does anybody else have any comments you
would like to share on that? That is a hidden part. Madam
Chairman, that is a hidden part of what is missing here.
MS. MARTIN. I think it is a hidden part, and to some extent,
what you say about it being prevalent in the poor community
because they don't have access is completely true, and therefore,
they self-medicate that way. Then if you get into a more affluent
area of society, you see people like myself, I have several friends
who did the same thing. We didn't want to admit we were
suffering, and we didn't want to go to a doctor and get help. We
didn't want to seek any kind of outside assistance, so we used
drugs. SSRIs work on the brain by stimulating serotonin and
causing the brain to release serotonin. That is exactly what ecstasy
does. Ecstasy floods your brain with serotonin, so taking an
ecstasy pill, for me, was like overdosing on my antidepressant. It
was amazing. People just say, you are just spoiled kids having a
good time, or you are poor, you don't have adequate resources.
Well, people really are missing that hidden side of drug abuse and
alcohol abuse that is self-medication. It makes us feel better.
MS. MYRICK. Yield back?
MR. RUSH. Yes.
MS. MYRICK. Thank you. You are right. This is an issue we
don't talk about. Our granddaughter did the same thing. I have a
question about you, and I am glad you are talking about that issue,
by the way. I hope you will keep on doing that.
MS. MARTIN. I will try.
MS. MYRICK. My question was, what was the final straw? I
know you lost your job, but what was the final straw that made you
say, I need to get help?
MS. MARTIN. It actually wasn't losing my job. I knew I was
about to lose my job. I had people in my office saying, what is the
matter with you, you don't seem like you are enjoying yourself? I
was regularly asked if I was suffering from some sort of nasal
condition because my nose ran a lot. It finally kind of came to a
head in the fall. My grandmother had passed away, and what was
pretty much just a weekend binge became an all-week obsession. I
had a very close friend who had suffered from depression and
mental illness and was one of my drinking buddies for the longest
time, and he finally came to me and said, you have to stop or
something bad is going to happen, and you need to get help. So
that was the final straw. When the person you drink with most of
the time says you are drinking too much, then you kind of know
you are in trouble.
MS. MYRICK. It was an intervention by a friend.
MS. MARTIN. It was, yes.
MS. MYRICK. Thank goodness.
Mr. Lamphere, again, thank you for being here. I was glad to
heard you talk about this being a physical illness because, my point
in this hearing has been this awareness issue of brain disease, and
it is no different than heart disease and diabetes and all the other
things that we deal with.
We seem to take our brain and put it over here on a shelf, and
then here is our body over here, so please keep doing that.
But was there anything in your life, going through this, that
you would have done differently? If you look back on it, is there
any point where you would have realized, can you see anything
now that would be helpful to other people possibly?
MR. LAMPHERE. There is some interesting work being done in
New York. I think people have felt that depression always was the
causative item of divorce, because of the extraordinary black
vortex that sucks the spouse right in, and work being done on what
is the middle ground that a spouse can take in that. What is
interesting, though, to answer your question is the research that is
being done which is, did the marriage cause the depression to
begin with, and the drinking or anything else behaviorally that
started? I think people might need to start thinking about that.
That they have been depressed for prolonged periods of time and
maybe self-medicating, and it has to do with the relationship rather
than anything else that needs to be addressed that could be the
causative item of the depression.
MS. MYRICK. I appreciate that.
Mr. Earley, you have done a lot of research on the prison
systems and the jails and the problem that government is paying
for. And I hope you will continue along those lines. I have a son
who works in that field, and he tells me continually, the percentage
of people that are in prison who have a problem with their brain
and drugs or alcohol, et cetera, has, gotten them here. And I think
we have got to face those tie-ins that we haven't looked at before
as a society, because they are very real, and as Mr. Rush was
saying, those are areas that sometimes we don't look at.
The frustration that you have experienced, I know is very
difficult. And the system is a mess from the standpoint of what
you can do. We have gone through that with our granddaughter.
That is why it took us 6 years to get her diagnosed, because she
wouldn't stay anywhere long enough, because the laws would say
she could get out and up. You could never get her diagnosed.
Recommendations that you have, and I know we don't have time
today, but anything that you can share with the committee and
anything that we could do, as Ms. Baldwin was saying, that would
help would be very beneficial because some of what we have done
has caused the problem, and then you get all these jurisdictional
problems in addition, and of course, we can't do a lot about that,
but nevertheless, there are some things that maybe we could work
on and you could be very helpful if you would be willing to work
on that as well.
MR. EARLEY. I appreciate that. I think if you look at
deinstitutionalization, the population that was in State mental
hospitals, as it goes down, jails and prisons went up.
You know one of the quick answers, one of the quick fixes,
every police department in this Nation should have a crisis
intervention training program, CIT. Fairfax should have one.
None were available. These are officers who are trained to deal
with people with mental illness. In Miami, the year I was there,
the Miami police department, I saw them disarm a man with two
knives without him getting hurt. He later thanked them. That
same time period, the Miami-Dade Police Department killed five
people with mental illnesses because they didn't know how to take
care of them. CIT, just like bomb squad, hostage rescue, every
police department should have one of those.
MS. MYRICK. Very good advice, again, thank you all very
much for being here. Are there further questions? Chairman
Deal?
Then that concludes our hearing for today. Thank you. We are
adjourned.
[Whereupon, at 1:20 p.m., the subcommittee was adjourned.]