Hope Through Advocacy
NAMI Convention Plenary ♦ Cincinnati, Ohio ♦ June 27, 2002
E. Fuller Torrey, M.D.
President, Treatment Advocacy Center
www.psychlaws.org
Research:
The Good News
Advances in research
Bad
mothers
Genetics
& neurotransmitters
1950
1960
Molecular
psychiatry:
genomics &
proteomics
Neuroimaging:
CT, MRI, PET
1970
1980
1990
DNA
microarrays
measuring
thousand of
genes,
e.g., the
dopamine
system,
developmental
genes, viruses,
etc.
2000
Scientific American, Feb 2002
DNA
genes
mRNA
expressed
genes
proteins
mixtures of
20 amino
acids
fire station
(antibodies)
blueprint
(genes)
building
(protein)
WHAT
COULD BE
WHAT
MIGHT BE
WHAT
IS
Research:
The Bad News
bricks
(RNA)
house
(structural proteins)
Only 8% of the grants
study clinical or
treatment aspects of
severe mental illnesses.
Protein comparison of brain
tissue from person with
schizophrenia/bipolar vs.
normal control
Proteins as targets
for medications
office building
(neurotransmitters)
National Institute of
Mental Health
Only 22% of NIMH
grants have anything
to do with severe
mental illnesses.
“Proteins, not genes, are
where the action is.”
Torrey EF et al. Missions
Impossible: The Ongoing Failure
of NIMH To Support Sufficient
Research on Severe Mental
Disorders (Arlington, Va.: The
Treatment Advocacy Center,
September 2000).
What kind of research does
NIMH support with the other
78% of its grants?
•
•
“Daytime Sleepiness: Prevalence,
Consequences, and Risks”
$338,818
“Two Few Hours: Time
$60,959
Pressures and Well Being”
•
“Revealing Secrets Leads to
Health Benefits”
$32,957
•
“Adolescent Romantic
Relationships”
$26,998
NIMH Grant Awards
1972–2002
To study postpartum
psychosis:
1
To find out what NIMH is funding, go to www.nih.gov. Click on “Grants,” then
“CRISP,” then “Go to CRISP Query Form.” Complete the “Enter Search Terms”
box, choose “and,” “or,” or “phrase” under Global Logic, and under “Institutes and
Centers” choose NIMH. Under “Fiscal Year,” use the Ctrl button to choose multiple
years. Click on “Submit Query.” From the Hit List, click on any Project Title you are
interested in and, on the resulting Abstract page, note the Grant Number and PI
Name (near the beginning) and the state and fiscal year (near the end) of any
grant you are interested in knowing the financial data on. To find out how much
money a grant recipient was awarded, go to www.nih.gov, click on “Grants,” then
“Grants Page,” then (under “Grants Topics”) “Award Data.” Click on “Index” (at
the bottom), then “Awards by State and Foreign Site.” Choose first the appropriate
fiscal year, and then the state. Use your browser’s Find function to search by PI
name and/or grant number. “Amount Awarded” is shown on the far right.
Services:
The Good News
To study
pigeons:
92
We know how to
deliver high-quality,
cost-effective
services to
individuals
with severe
psychiatric disorders.
We know that most such
individuals require longterm antipsychotic,
mood stabilizer, and/or
antidepressant medication,
in the lowest
effective dose,
carefully
monitored.
Lehman AF, Steinwachs DM. Translating research into practice:
the Schizophrenia Patient Outcomes Research Team (PORT) treatment
recommendations. Schizophr Bull 24:1–10, 1998.
Practice Guideline for the Treatment of Patients with Bipolar Disorder
(Revision). Am J Psychiatry 159 (Suppl):1–50, 2002.
Practice Guideline for the Treatment of Patients with Schizophrenia. Am J
Psychiatry 154 (Suppl):1–146, 1997.
We know that continuity
of care, and especially the
continuity of caregivers,
is very
important, as
demonstrated
by the PACT
model.
Torrey EF. Continuous treatment
teams in the care of the chronic
mentally ill. Hosp Community
Psychiatry 37:1243–1247, 1986.
Allness DJ, Knoedler WH. The
PACT Model of Community-Based
Treatment for Persons with
Severe and Persistent Mental
Illnesses: A Manual for PACT
Start-up (Arlington, Va.: NAMI,
1998).
2
We know that
rehabilitation and
opportunities for
employment
are very important,
as demonstrated
since 1948 by
the clubhouse model.
We know that decent,
affordable housing is very
important, and
that there must
be housing
available with
varying levels
of supervision.
We know that a few
individuals with severe
forms of schizophrenia
and bipolar disorder
require long-term
hospitalization and asylum
for their own protection.
Thus, you cannot shut
down all long-term beds.
We know how to measure
the quality of life for
individuals
with severe
psychiatric
disorders.
Bond GR. An economic analysis of psychosocial rehabilitation. Hosp
Community Psychiatry 35:356–362, 1984.
Dincin J, Witheridge TF. Psychiatric rehabilitation as a deterrent
to recidivism. Hosp Community Psychiatry 33:645–650, 1982.
Winerip M. 9 Highland Road
(New York: Pantheon, 1994).
Trepp JK. Lodge Magic: Real
Life Adventures in Mental
Health Recovery (Minneapolis:
Tasks Unlimited, 2000).
Lamb HR. The need for
continuing asylum and
sanctuary. Hosp Community
Psychiatry 35:798–800, 1984.
Wasow M. The need for asylum
for the chronically mentally ill.
Schizophr Bull 12:162–167,
1986.
Lehman AF. Measures of quality of life among persons with severe and
persistent mental disorders. Soc Psychiatry Psychiatr Epidemiol 31:78–88,
1996.
Smith GR et al. Principles for assessment of patient outcomes in mental
health care. Psychiatr Serv 48:1033–1036, 1997.
3
Services:
The Bad News
One of the studies also asked
why the individuals were not
receiving treatment.
The largest number–
55% –were not
receiving treatment
because they said
there was nothing
wrong with them.
Problem #1
The failure to treat
individuals with
serious psychiatric
disorders
Four recent studies in the
U.S. reported that
approximately half of all
individuals with severe
psychiatric disorders had not
received any treatment in
the previous year.
Von Korff M et al. Prevalence of treated and untreated DSM-III
schizophrenia. J Nerv Ment Dis 73:577–581, 1985.
Health care reform for Americans with severe mental illnesses: report
of the National Advisory Mental Health Council. Am J Psychiatry
150:1447–1465, 1993.
Narrow WE. Mental health service use by Americans with severe mental
illnesses. Soc Psychiatry Psychiatr Epidemiol 35:147–155, 2000.
Kessler RC et al. The prevalence and correlates of untreated serious
mental illness. Health Serv Res 36:987–1007, 2001.
Kessler RC et al. The prevalence
and correlates of untreated
serious mental illness. Health
Serv Res 36:987–1007, 2001.
Contrary to what is often
claimed, stigma, fear of
involuntary hospitalization,
and dissatisfaction with
services were not mentioned
by many people as reasons for
not receiving treatment.
Thus, they had anosognosia,
or lack of awareness of their
illness. This condition is caused
by damage to the brain’s
frontal and/or parietal lobes.
Kessler RC et al. The prevalence
and correlates of untreated
serious mental illness. Health
Serv Res 36:987–1007, 2001.
Amador X. I Am Not Sick, I Don’t
Need Help (Peconic, N.Y.: Vida
Press, 2000).
Only:
7% were “scared about
hospitalization against own will”
6% were “concerned about what
others might think”
5% were “not satisfied with
available services”
1% “could not get an appointment”
0% had a “language problem”
4
The failure to treat individuals
with serious psychiatric
disorders is the major reason
why such individuals:
See www.psychlaws.org.
Click on “Briefing Papers.”
• become homeless
• commit actions leading
to arrest and jail
Most individuals with anosognosia
will not accept voluntary
treatment because they do not
believe anything is wrong with
them. Assisted treatment is often
necessary to help them.
• are victimized
• commit violent acts
Many forms of assisted treatment
exist. Conditional release is used in
New Hampshire. Assisted outpatient
treatment is legally available in 41
states but not widely used, despite
studies showing that it:
• decreases hospital admissions
• decreases arrests and jailings
• decreases episodes of violence
Fernandez GA, Nygard S. Impact of involuntary outpatient commitment on the
revolving-door syndrome in North Carolina. Hosp Community Psychiatry 41:1001–
1004, 1990.
Hiday VA, Scheid-Cook TL. The North Carolina experience with outpatient
commitment: a critical appraisal. Int J Law Psychiatry 10:215–232, 1987.
Munetz MR et al. The effectiveness of outpatient civil commitment. Psychiatr Serv
47:1251–1253, 1996.
Rohland BM. The Role of Outpatient Commitment in the Management of Persons
with Schizophrenia. Iowa Consortium for Mental Health, Services, Training, and
Research (May 1998).
Swanson JW et al. Involuntary out-patient commitment and reduction of violent
behaviour in persons with severe mental illness. Br J Psychiatry 176:224–231,
2000.
Swanson JW et al. Can involuntary outpatient commitment reduce arrests among
persons with severe mental illness? Crim Justice Behav 28:156–189, 2001.
Swartz MS et al. Can involuntary outpatient commitment reduce hospital
recidivism? Am J Psychiatry, 156:1968–1975, 1999.
Van Putten RA et al. Involuntary outpatient commitment in Arizona: a
retrospective study. Hosp Community Psychiatry 39:953–958, 1988.
Zanni G, deVeau L. Inpatient stays before and after outpatient commitment. Hosp
Community Psychiatry 37:941–942, 1986.
Some people assert that
nobody should be
subjected to assisted
treatment until public
services are “adequate.”
Such people should be
asked to explain:
1. How they define “adequate”
2. What percentage of
individuals with
serious psychiatric
disorders must be
eating from
garbage cans or in
jail before assisted
treatment should
be used
5
Problem #2
Jails have replaced
psychiatric hospitals
The three largest
psychiatric institutions in
the United States are:
Los Angeles County Jail
In virtually every county in the
United States, the county jail
holds more individuals with
serious psychiatric disorders than
any psychiatric facility in that
county. For example:
Travis County, Tex.
San Diego County, Calif.
King County, Wash.
Dade County, Fla.
Cook County Jail, Chicago
Rikers Island Jail, NYC
Forty percent (40%) of
mentally ill individuals in NAMI
families have been arrested,
mostly for misdemeanor
crimes
associated
with their
untreated
illness.
The problem is getting worse
and becoming a major expense
for jail systems.
Steinwachs DM et al. Family
Perspectives on Meeting the
Needs for Care of Severely
Mentally Ill Relatives: A National
Survey (Arlington, Va.: NAMI,
1992).
The quality of life for individuals
with severe psychiatric
disorders in jail is abysmal.
Beatings and victimization by
other inmates or jail personnel
occur regularly. Such
individuals also account for the
majority of jail suicides.
Torrey EF et al., Criminalizing the Seriously Mentally Ill: The Abuse of
Jails as Mental Hospitals (Washington, D.C.: Health Research Group
and National Alliance for the Mentally Ill, 1992).
From 1996 to 2001, in the Oklahoma
prison system, the number of
prescriptions for psychiatric
medications increased
from 22,000 to over
40,000.
Hinton M, Lindley T. Options
few for mentally ill: state’s lack
of resources leaves many on
waiting lists, in jail. The Daily
Oklahoman, Nov. 5, 2001.
Jail system expenses
Last year, the Cuyahoga
County (Ohio) Jail spent
$175,000 for olanzapine
(Zyprexa) alone.
Los Angeles County Jail
spends $10 million per
year on psychiatric
medications.
Exner R. Sheriff runs own
pharmacy unit in jail. The Plain
Dealer, Nov. 5, 2001.
Sheriff social worker: helping
people off the streets. Los Angeles
Times, Nov. 20, 2001.
6
The major reason for
the increasing number
of psychiatrically ill
individuals in jails is
our failure
to treat them
before
they are
arrested.
Jail diversion programs and
Mental Health Courts are
very laudable but are merely
stopgap measures. They do
not address the
fundamental problem:
Within 6 months of discharge
from
state hospitals,
12% of patients in Oklahoma
and
17% of patients in Ohio
had been in jail.
Behavioral Sciences, Aug. 26,
2000).
Belcher JR. Are jails replacing the
mental health system for the
homeless mentally ill? Community
Ment Health J 24:185–195, 1988.
Problem #3
Victimization
and suicide
Our failure to treat
individuals with severe
psychiatric disorders.
In D.C., 34% of homeless
mentally ill women had been
sexually assaulted. The
authors concluded:
TIBS ESH Tracking and
Community Monitors: August
2000 Update and 2nd Quarter
Results (Tulsa Institute of
In California, 33%
of “psychiatrically
disabled” residents
of board-andcare homes had
been robbed and/or
assaulted in the
preceding year.
Lehman AF, Linn LS. Crimes against discharged mental patients in
board-and-care homes. Am J Psychiatry 141:271–274, 1984.
“For episodically homeless
women with serious mental
illness, the lifetime risk for
violent victimization is so high
that rape and physical battery
are normative experiences.”
Goodman LA et al. Episodically
homeless women with serious
mental illness: prevalence of
physical and sexual assault.
Am J Orthopsychiatry 65:468–
478, 1995.
In a four-state study
(CT, NH, MD, NC) of 782
individuals with “severe
mental illness,” within the
past year 26% of women
had been sexually assaulted
and 34% of men had been
physically assaulted.
Goodman LA et al. Recent
victimization in women and
men with severe mental illness:
prevalence and correlates.
J Trauma Stress 14:615–632,
2001.
7
Between 10 and 15% of
individuals with
schizophrenia and bipolar
disorder commit suicide.
Many others attempt suicide.
Stephens J et al. Suicide in
patients hospitalized for
schizophrenia: 1913–1940.
J Nerv Ment Dis 187:10–14,
1999.
The suicide rate for the
general population is 1%.
• There are over 29,000 suicides each
year in the United States.
• 19%, or 5,510 individuals, are
psychotic at the time they suicide.
• One study showed that seriously
mentally ill individuals who are not
treated are 7 times more likely to
commit suicide than those who are
treated.
• Thus, adequate psychiatric
treatment could prevent as many
as 5,000 suicides each year.
Problem #4
It is likely that
schizophrenia and
bipolar disorder
are increasing in
incidence, and
nobody is paying
attention.
There are suggestions that
this increase has continued:
• The increasing number of
seriously mentally ill individuals
who are homeless or in jails
• The repeated underestimation
by state mental health agencies
and by managed care companies
of the number of individuals
needing services
Robins, E. Psychosis and
suicide. Biol Psychiatry
21:665–672, 1986.
De Hert M et al. Risk factors
for suicide in young people
suffering from schizophrenia:
a long-term follow-up study.
Schizophr Res 47:127–134,
2001.
There is
evidence that
these disorders
increased at
least 7-fold, as
a rate per
population,
between 1800
and 1950.
Suggestions of increase
• US: ECA and NCS prevalence
studies reported much higher
rates than earlier studies
• England: 40% increase in firstonset psychosis in Nottingham
between 1978 and 1999
• Denmark: 100% increase in first
admissions for schizophrenia
between 1986 and 1997
Victimization and suicide are
predictable because:
• We require many individuals with
psychiatric disorders to live in rundown, crime-ridden neighborhoods
• We fail to do unannounced
inspections of their group homes
• We fail to ensure that they are
receiving treatment.
Torrey EF, Miller J. The Invisible
Plague: The Rise of Insanity from
1750 to the Present (New
Brunswick, N.J.: Rutgers
University Press, 2002).
Brewin J et al. Increasing incidence
of psychoses in Nottingham 1978–
1999 [abstract]. Schizophr Res 53
(Suppl 1): 32, 2002.
Tsuchiya KJ, Munk-Jørgensen P.
First admission rates of
schizophrenia in Denmark, 1980–
1997: have they been increasing?
Schizophr Res 54:187–191, 2002.
8
So, what is the Center for
Mental Health Services
(CMHS) funding?
No studies to
ascertain whether
the incidence of
schizophrenia or
bipolar disorder
is changing.
What CMHS is funding:
Conferences such as the one at
which a speaker described
schizophrenia as “a healthy,
valid, desirable
condition … a
healthy
transformational
process that should
be facilitated
instead of treated.”
Problem #5
Stigma
and
violence
Multiple studies have shown
that violent acts committed by
individuals with severe
psychiatric
disorders are
the single
Andrea Yates
Russell Weston
largest cause
Andrew Goldstein
of this stigma.
Instead, they are funding:
$1.3 million to the
National Empowerment
Center, whose directors
believe that “mental
illness is a coping mechanism,
not a disease” and that “the
covert mission of the mental
health system … is social control.”
Torrey EF. Hippie healthcare
policy. Washington Monthly,
April 2002, pp. 17–21.
What CMHS is funding:
A 1997 CMHS conference at
which participants discussed how
to bring about a legal challenge
to involuntary commitment so
that families who commit a
family member to a psychiatric
hospital could be sued and have
their house taken away.
Stigma continues to be a
major obstacle for individuals
with severe psychiatric
disorders, e.g., socialization,
housing, employment.
Link BG et al. The social rejection
of former mental patients:
understanding why labels matter.
Am J Soc 92:1461–1500, 1987.
Wahl OF. Mental health
consumers’ experience of
stigma. Schizophr Bull 25:467–
478, 1999.
Thornton JA, Wahl OF. Impact
of a newspaper article on
attitudes toward mental illness.
J Community Psychol 24:17–24,
1996.
9
The 1999 Surgeon General’s Report
on Mental Health cited studies
showing that “the perception of
people with psychosis as being
dangerous is stronger today than in
the past” (p. 7).
Mental Health: A Report of the
Surgeon General (Rockville, Md.:
U.S. Department of Health and
Human Services, 1999), p. 7.
Percentage of people who believe
that mentally ill persons are violent
1950: 13%
1996: 31%
People with severe
psychiatric disorders who
are being treated and are
not substance abusers are
not more dangerous than
the general population.
Until we address the
problem of violent
behavior by individuals
with severe psychiatric
disorders, we will not be
able to decrease stigma.
Because of the
IMD exclusion,
states save money
by closing state
hospital beds and
dumping the
patients onto the
streets.
EXIT
People with severe psychiatric
disorders who are not being
treated and who are substance
abusers are more dangerous; a
2000 NIMH report estimated
that they are responsible for
9–15% of all violent acts,
including homicides. This
would equal approximately
1,400 homicides each year.
For more information, see
www.psychlaws.org. Click on
“Briefing Papers.”
There are no
fiscal
incentives to
provide good
services.
All the
incentives
are to deny
services.
Harwood H et al. The Economic
Costs of Mental Illness, 1992
(Rockville, Md.: NIMH, 2000),
pp. 1–5.
Problem # 6
The funding system
for psychiatric
services guarantees
the failure of the
services
Imagine what services would
look like if payments were
made on the basis
of measurements
of quality of life,
number employed,
decrease in
homelessness, etc.
10
Problem #7
Pharmaceutical
companies charge
excessive prices
and make
excessive profits
Pharmaceutical company
profits are higher than those
of any other U.S. industry
“The top 10 drug companies are reported to
have profits averaging about 30 percent of
revenues—a stunning margin. Over the past
few years, the pharmaceutical industry as a
whole has been by far the most profitable
industry in the United States.”
New England Journal of Medicine, 2000
The budgets of mental health
centers, county and state mental
health programs, and VA
programs have been devastated
by the rapidly rising drug costs.
For example, between 1990 and
2002, the cost of antipsychotic
medications for Medicaid patients in
Georgia increased 9-fold per patient.
Problem #8
For-profit m anaged
care has alm ost
nothing to do w ith
care. Rather, it is
m anaged costs.
Psychiatric drugs cost
much less in other countries
than in the United States
• Risperidone costs 1/2 as much in
France.
• Olanzapine costs 1/2 as much in
Canada.
Sasich LD et al. International
Comparison of Prices for
Antidepressant and Antipsychotic
Drugs (Washington, D.C.: Public
Citizen’s Health Research Group,
July 1998).
• Clozapine costs 1/3 as much in
Germany and 1/6 as much in Spain.
Angell M. The pharmaceutical
industry—to whom is it
accountable? N Engl J Med
342:1902–1904.
The people generating
Big Profits for Big
Pharm a are
receiving Big Pay
CEO compensation for 1997
Johnson&Johnson risperidone
$3.2 million
Eli Lilly
olanzapine
$7.4 million
Abbott
Pfizer
sertindole
ziprasadone
$9.5 million
$14.5 million
Martin BC et al. Antipsychotic
prescription use and costs for
persons with schizophrenia in
the 1990s: current trends
and five year time series
forecasts. Schizophr Res
47:281–292, 2001.
Average psychiatric hospital stay
1990: 3-1/2 wks
2000: 1-1/2 wks
Average time to respond to
psychiatric medication
10% of patients: 1 wk
30% of patients: 2 wks
Magellan Health Services
Provides psychiatric care for
Medicaid patients in 7 states,
including:
• Maryland—a disaster
• Tennessee—a disaster
• Montana—state legislature
terminated contract for
poor services
11
But financially, Magellan
is doing very nicely
• “For the nine months ended
6/01, revenues rose 9% to
$1.32 billion.”
Yahoo Finance: Profile—Magellan Health Services,
http://biz.yahoo.com/p/m/mgl.html
Business Local CEO Pay, http://www.washingtonpost.com/wpdyn/business/companyresearch/ceopay/2000/
• Henry Harbin, M.D., Chairman
of Magellan, received total
compensation of $4.9 million
in 1999.
United Behavioral Health
provides psychiatric care to
15 million individuals,
including two counties in
Washington and one in
California. CEO Saul
Feldman, Ph.D., is
described in the San
Francisco Chronicle as
living in a penthouse atop
the Four Seasons Hotel.
William McGuire, M.D.,
CEO of the parent
United Health Care
Group Corp.,
received total
compensation
in 2000
of $54.1 million
(not including
unexercised stock options).
In summary,
for-profit managed care
is about
wealth
penthouses
not about
health
clubhouses
increased
stock options
making
a fortune
increased job
options
treating the
unfortunate
Zinko C. Ultra-wealthy enjoy
living in luxury above it all: in
S.F. highrise hotel condos are
the latest trend, San Francisco
Chronicle, Apr. 8, 2001.
Healthy Pay for Health Plan
Executives, Families USA
Special Report, June 2001.
Available online at
www.familiesusa.org.
Dr. McGuire’s personal
compensation was equal to,
or greater than, the total
mental health budget
of 9 states
(Alaska, Del.,
Idaho, N.Mex.,
N.Dak., S.Dak., Vt.,
W.Va., and W yo.).
What is the answer?
How do you build
communities of hope?
Advocacy is the
basis for hope
for the future.
“He that lives upon hope
[alone] will die fasting.”
Benjamin Franklin
12