NAMI E-News May 13,
2002 Vol. 02-71
___________________________________________________________________
NAMI Board President
Speaks to the Appropriations Subcommittee on Labor, HHS, Education & Related
Agencies
Below is testimony submitted by NAMI Board President Jim McNulty
on behalf of NAMI to the Appropriations Subcommittee on Labor, HHS, Education
and Related Agencies. Later this year, this subcommittee will draft a spending
bill for the fiscal year that begins October 1, 2002 that will include funding
for dozens of federal agencies including the National Institute of Mental Health
and the Center for Mental Health Services. This testimony represents NAMI's
recommendations for funding levels for these agencies and for key priorities
that will direct resources to individuals with serious brain disorders.
STATEMENT OF JIM MCNULTY ON BEHALF OF THE NATIONAL ALLIANCE FOR THE MENTALLY ILL
BEFORE THE HOUSE OF REPRESENTATIVES COMMITTEE ON APPROPRIATIONS SUBCOMMITTEE ON
LABOR, HHS, EDUCATION AND RELATED AGENCIES
MAY 7, 2002
Chairman Regula, Representative Obey, and members of the Subcommittee, I am Jim
McNulty of Bristol, Rhode Island, President of the National Alliance for the
Mentally Ill (NAMI). Like so many NAMI members, mental illness has directly
affected my life. In 1986, I was first diagnosed with bipolar disorder, also
known as manic-depressive illness. NAMI is the nation's largest grassroots
advocacy organization, 220,000 members representing persons with serious brain
disorders and their families. Through our 1,200 chapters and affiliates in all
50 states, we support education, outreach, advocacy and research on behalf of
persons with serious brain disorders such as schizophrenia, manic depressive
illness, major depression, severe anxiety disorders and major mental illnesses
affecting children.
Mr. Chairman, for too long severe mental illness has been shrouded in stigma and
discrimination. These illnesses have been misunderstood, feared, hidden, and
often ignored by science. Only in the last decade have we seen the first real
hope for people with these brain disorders through pioneering research that has
uncovered both a biological basis for these brain disorders and treatments that
work. From NAMI's perspective, this progress was confirmed for all Americans in
1999 with the release of the Surgeon General's Report on Mental Health. More
recently, President Bush affirmed these principles in a speech in New Mexico
when he declared:
"Millions of Americans, millions, are impaired at work, at
school, or at home by episodes of mental illness. Many are disabled by severe
and persistent mental problems. These illnesses affect individuals, they
affect their families, and they affect our country. As many Americans know, it
is incredibly painful to watch someone you love struggle with an illness that
affects their mind and their feelings and their relationships with others. We
heard stories today in a roundtable discussion about that -- what the struggle
means for family. Remarkable treatments exist, and that's good. Yet many
people -- too many people -- remain untreated. Some end up addicted to drugs
or alcohol. Some end up on the streets, homeless. Others end up in our jails,
our prisons, our juvenile detention facilities. Our country must make a
commitment: Americans with mental illness deserve our understanding, and they
deserve excellent care. They deserve a health care system that treats their
illness with the same urgency as a physical illness." - President George
W. Bush, April 29, 2002.
These recent events - the 1999 Surgeon General's Report, and the
President's statement- mark a historic turning point and growing recognition of
the burden of mental illness on our nation and the need to advance both
scientific research and access to treatment and services for individuals living
with these illnesses. These developments also reflect well on this
Subcommittee's wise and substantial investment in biomedical research directed
to the most complex organ in the human body, the brain. In NAMI's view,
scientific research - made possible by the support of this Subcommittee - has
laid the foundation for the Surgeon General's report and President's Bush's call
for parity in insurance coverage.
Severe Mental Illness
Research at the NIH
NAMI deeply appreciates the leadership of this Subcommittee in
moving to significantly increase the National Institutes of Health (NIH) budget.
Your leadership has been the driving force behind this bipartisan effort in
Congress - now endorsed by the Bush Administration - to complete the job of
doubling the federal commitment to biomedical research over a five-year period.
Mr. Chairman, scientific discovery, made possible through this Subcommittee's
support for the NIH, is bringing new treatments to people living with serious
brain disorders such as schizophrenia and bipolar disorder. Tremendous advances
in treatment of severe mental illnesses occurred during the last ten years, the
Decade of the Brain, from the introduction of Prozac and Clozapine and other new
drug discoveries that have virtually revolutionized mental illness treatment.
Today, many more consumers, patients with serious mental illnesses, stand able
to take charge of their lives, to be productive, to enjoy recovery, because of
these treatment advances.
Treatment for mental illnesses, while impressive and with a stronger record of
efficacy than those for cardiovascular disease and other medical disorders, is
either inaccessible or ineffective for some patients and their families. Many
people with severe and persistent mental illnesses find only incomplete relief
from their symptoms; disability is still all too commonly associated with these
illnesses. In my case, treatment for bipolar disorder has proven effective, but
never for all of the symptoms. Individuals with obsessive-compulsive disorder, a
brain disorder that has been pinpointed to specific higher regions of the brain,
still often fail to achieve much gain in treatment. For children and
adolescents, matters are worse because we know so little about the illnesses as
they emerge during development, and we know even less about how to effectively
and safely treat them.
We should not underestimate how much more must be learned about the brain
regions involved in these serious brain disorders, the molecules at the roots of
the terrible symptoms, and the genes that lead to vulnerability to these
illnesses. The Decade of the Brain has really only brought us to the threshold
of discovery when it comes to brain diseases such as schizophrenia,
manic-depressive illness, obsessive-compulsive disorder, childhood mental
illnesses and others. We are only now poised to fully probe and finally
understand the biological underpinnings of the most serious mental illnesses.
That severe mental illness research ought to be a priority for our nation, is
demonstrated by data from the World Bank and World Health Organization. Severe
mental illnesses, including major depression, bipolar disorder, schizophrenia,
and obsessive-compulsive disorder, account for four of the top 10 most disabling
illnesses in the world. These brain disorders account for an estimated 20
percent of total disability resulting from all diseases and injuries. Mr.
Chairman, the public health burden to our nation from severe mental illnesses
demands that research on these diseases be a high priority, especially given the
scientific opportunities that exist in the brain sciences.
The national need for severe mental illness research is also starkly
demonstrated by particularly terrible statistics. Suicide is the eighth most
common cause of death in this country and the fourth most frequent cause of life
lost under age 65. Rates are increasing among young men and the elderly. As it
stands, 30,000 Americans will die by suicide this year, most of whom have a
serious mental illness. The most severe mental illnesses - schizophrenia and
bipolar disorder-disproportionately lead to suicide. Ten percent of the
2,000,000 U.S. citizens with schizophrenia will take their own lives; about half
will make a suicide attempt at some point. Fifteen percent to 20 percent of the
approximately 2,000,000 Americans with bipolar illness will die by suicide.
NIH Investment: A Call
for Increased Funding & Accountability
NAMI applauds the bipartisan leadership of this Subcommittee in
supporting increases for the NIH. NAMI also supports President Bush's proposed
increase for FY 2003 of $3.71 billion - bringing the agency's total up to $27.3
billion - completing the 5-year commitment to doubling the federal investment in
biomedical research. NAMI has also endorsed the recommendations of the
scientific community and the Ad Hoc Group for Medical Research Funding and their
proposal for a FY 2003 funding level at NIH of $27.3 billion.
But increased resources are not the only important objective for NIH: better
accountability is also essential. NAMI applauds your efforts to fairly boost NIH
funding and limit disease-of-the week approaches to appropriations. Nonetheless,
NAMI urges the Subcommittee to press NIH to invest their resources according to
public health need as well as scientific opportunity, as the 1998 Institute of
Medicine (IOM) report on NIH priority setting called for. NIH must balance its
investment among diseases so that increases in the budget go preferentially to
address illnesses that are disabling and costly and have been underfunded in the
past.
It is obvious to NAMI that severe mental illnesses would, and should be, a top
research priority if public health burden is the principal criteria by which
public research dollars are allocated. Yet, based on NIH's own recent estimates,
$1.00 is invested in research for every $6.86 in costs of AIDS, $9.96 in costs
of cancer, $65.65 in costs of heart disease, and $161.26 costs in schizophrenia.
In other words, 15 cents is spent on AIDS research per dollar of costs, compared
with 10 cents for cancer, two cents for heart disease, and less than one cent
for schizophrenia. This is obviously not a wise research investment strategy for
the United States.
NIMH: The Key to the
Cure for Severe Mental Illnesses
For NIMH, we also applaud this Subcommittee's leadership,
demonstrated by your boosting its appropriations significantly in the past few
years, up to its current level of $1.254 billion. NAMI is also grateful for the
Bush Administration's proposed $105 million increase for NIMH (up to $1.359
billion). However, NAMI would urge the Subcommittee to fund the NIMH up to the
"professional judgment" recommendation of $1.45 billion. NAMI believes that the
"professional judgment" recommendation is needed in order to increase the
agency's success rate for reviewed grants to at least 750 new and competing
grants. NIMH is currently attracting more research grant applications than any
other institute due to the leadership of the institute and the tremendous
research opportunities that exist in the neurosciences and in severe mental
illness research. NAMI believes that we must ensure that this time of interest,
strong leadership, and research opportunity is taken so that people with serious
brain diseases have the best hope for the future, for themselves and for their
families and future generations.
We urge you, Mr. Chairman, to help ensure that NIMH continues its move to spend
its taxpayer dollars wisely, with investments in basic neuroscience and
molecular biology that undergird the new treatment frontier for severe mental
illnesses. NAMI applauds the accomplishments of recently departed NIMH Director
Dr. Steve Hyman to increase the agency's commitment to research on serious brain
disorders and to ensuring that resources are directed towards pre-clinical,
clinical, and services research. NIMH should continue its efforts to identify
genes linked to severe mental illnesses; to fund and expand clinical research
into psychotic illnesses, serious disorders in children, and in mood disorders;
to continue the probe of the biology of serious mental disorders including
schizophrenia, mood, and anxiety disorders.
NIMH should also be encouraged to use the tools of behavioral science to better
understand the expression and best treatment of severe mental illnesses.
However, NAMI strongly recommends that research in prevention and psychosocial
research should be redirected in order to address problems associated with
serious mental illnesses, consistent with the recommendations of NIMH's own
National Advisory Mental Health Council. NAMI agrees with the recommendations of
the Council that the prevention research portfolio has all but excluded serious
mental illness research and instead focused on basic behavioral science issues
and or social problems such as adolescent relationships, divorce or poor
self-esteem. NAMI believes that we cannot let another five years go by studying
children who misbehave while we know so little about serious mental illnesses in
children and how to effectively treat these disorders.
What research issues are most compelling for NAMI's 220,000 members living with
severe mental illness?
-
More basic research on the brain and higher brain functioning;
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More pre-clinical research on the genes, molecules, and brain
regions involved in severe mental illnesses;
-
More clinical research aimed at understanding the best
treatment for these serious disorders and translating that research into
practice;
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More research aimed at better understanding and treating these
brain disorders in children;
-
Research aimed at diminishing relapse and disability in severe
mental illnesses;
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More research on how people with severe mental illnesses best
receive treatment and services;
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An accountable and responsible research investment strategy
that will help the nation's individuals with severe mental illnesses and their
families, as well as the country at large, which must shoulder the burden and
costs of these illnesses.
Finally, Mr. Chairman, NAMI would like to urge that NIMH's
colleague institutes, the National Institute on Drug Abuse (NIDA) and the
National Institute on Alcohol and Alcoholism (NIAAA) be directed to work
cooperatively with NIMH on the pressing public health crisis posed by persons
diagnosed with a severe mental illness who have a co-occurring substance abuse
disorder. NAMI believes that a large and growing body of scientific evidence is
making clear that integrated treatment, as opposed to parallel and sequential
treatment, is the most effective means of treating these co-occurring disorders.
NAMI urges that NIMH, NIDA and NIAAA should work in partnership to ensure that
progress continues in our efforts to better understand co-occurring mental
illness and chemical dependency.
SAMHSA & CMHS
Mr. Chairman, in addition to urging the Subcommittee to support
increased funding for brain research, I would also like to note the importance
of federally funded mental illness services through the Center for Mental Health
Services (CMHS) at SAMHSA. Federal support for community-based care is a
critical resource for children and adults with the most severe mental illnesses.
With many states facing large cuts to their mental illness treatment budgets and
the continuing long-term trend of reducing their psychiatric hospital beds, the
federal investment in community-based care continues to grow in importance. NAMI
is excited at the news that President Bush has formed a White House Commission
to examine strategies for the federal government to assist states and localities
in modernizing their public mental health programs to address gaps in services
and how to improve both quality and access. This Commission will be releasing
its findings and recommendations within a year. In the meantime, NAMI would like
to recommend the following key priorities for the Subcommittee in considering
SAMHSA's FY 2003 budget request.
PATH - NAMI strongly supports the $7 million increase proposed by the
President for the Projects to Assist Transition from Homelessness (PATH) program
to help homeless individuals with severe mental illnesses and co-occurring
substance abuse disorders (increasing funding to $47 million). The
Administration's proposed increase for PATH would result in an additional 31,000
homeless individuals with severe mental illnesses receiving services. Given the
disproportionate representation of adults with severe mental illness among the
chronically homeless population, we strongly support the Administration's
efforts to place the highest priority in meeting their needs for permanent
supportive housing and community-based services.
Mental Health Block Grant (MHBG) - NAMI applauds the actions of this
Subcommittee last year to increase the MHBG by $13 million, up to its current
level of $433 million. This increase is a major step forward in helping states
address the widening gaps in our nation's public mental illness treatment
system. Unfortunately, the President's budget proposes freezing the MHBG for FY
2003, despite the growing strains on state mental health budgets. As noted
above, budget cuts at the state level are resulting in a continued widening of
gaps in the public mental illness treatment system. The consequences of these
emerging cracks in the service system are readily apparent, not just to our
consumer and family membership, but also to the public: the growing number of
homeless adults on our nation's streets who receive no treatment services, well
publicized tragic incidents involving individuals with severe mental illness who
are not accessing adequate treatment services and the growing trend of
"criminalization" of mental illness and the stress it is placing on state and
local jails and prisons.
NAMI urges the Subcommittee to support an increase for the Mental Health Block
grant program for FY 2003 and to target any additional funds for the program to
replication of evidence-based service delivery models for persons with severe
mental illness in the community. In particular, NAMI would urge you to direct
CMHS to target Block Grant funding to evidence-based programs such as assertive
community treatment (also known as PACT). PACT programs use a 24-hour, seven
day-a-week, team approach that delivers comprehensive treatment, rehabilitation
and support services in community settings. High-quality PACT programs are
typically implemented at a cost that is significantly less than placing an
individual in a jail, a residential treatment program or a hospital. PACT is
especially effective in serving persons who are the most treatment resistant,
persons with a co-occuring mental illness and substance abuse disorder and
persons who are high users of inpatient hospitalization services.
NAMI is also concerned that the Substance Abuse Treatment and Prevention Block
Grant is not currently supporting programs serving persons dually diagnosed with
mental illness and addictive disorders. Evidence-based research, as confirmed by
the NIH, verifies that integrated treatment, as opposed to parallel
collaborative or sequential approaches, is the most effective model for serving
persons with a dual diagnosis. NAMI therefore recommends that the Subcommittee
direct SAMHSA to allow greater flexibility for states in using both programs to
promote integrated treatment services for persons with co-occuring mental
illness and addictive disorders. Finally, NAMI recommends that the Subcommittee
consider requiring states to report an unduplicated count of persons served by
diagnosis, age and services consumed using the targeted initiative MHBG funds.
CMHS Jail Diversion - The President's budget requests $5 million for the
CMHS Jail Diversion program for FY 2003. People with serious mental illness are
frequently arrested for minor offenses, many times as a result of homelessness,
and then they are incarcerated in jails where their mental health needs are not
met. There are also significant numbers of persons with serious mental illness
who come in contact with the police, but are not arrested. The U.S. Department
of Justice estimates that 16% of all inmates in state and federal jails have a
severe mental illness, as many as 283,000 people with serious mental illnesses
were in jail or prison - more than four times the number in state mental
hospitals. The CMHS Jail Diversion program assists states and communities in
developing treatment programs to get non-violent offenders with mental illness
out of the criminal justice system and into treatment. NAMI urges full funding
for the Administration's request for the CMHS Jail Diversion program for FY
2003.
CMHS Discretionary Programs - The President's budget proposes a $7
million reduction for the CMHS Projects of Regional and National Significance (PRNS)
for FY 2003. Included in this proposal is a reduction for the Community Action
Grants program. The Community Action Grants at CMHS are a critical link in
federal efforts to support knowledge dissemination and replication of
evidence-based practices, including integrated treatment, jail diversion, police
training and cultural competence. There is growing concern that without guidance
from Congress, CMHS will discontinue Community Action Grants in FY 2003.
Communities have used these grants constructively to stimulate the development
of good programs and services for people with severe mental illnesses. NAMI
supports continuation of the Community Action Grants program in FY 2003.
Conclusion
Mr. Chairman, thank you for the opportunity to offer NAMI's
views on FY 2003 funding for programs of critical importance to people with
serious brain disorders. NAMI looks forward to working with you in the coming
months to educate both the general public and your colleagues in Congress about
the critical importance of investment in biomedical research and improved
services for children and adults living with severe mental illness and their
families.
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Thank you.
