NAMI E-News April 2, 2001 Vol. 01-88
* The following is testimony by NAMI Board President Jacqueline Shannon on behalf of NAMI delivered 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, 2001 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 JACQUELINE SHANNON
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
MARCH 29, 2001
Chairman Regula, Representative Obey, and members of the Subcommittee, I am Jacqueline Shannon of San Angelo, Texas, President of the National Alliance for the Mentally Ill (NAMI). In addition to serving as NAMI's President, I am also the mother of Greg Shannon. Greg was diagnosed with schizophrenia in 1985. For the past 16 years, Greg and our entire family have struggled with his illness. Your Subcommittee oversees agencies that are of tremendous concern to people with serious brain disorders and their families. I am therefore pleased today to offer NAMI's views on the Subcommittee's FY 2002 bill.
Who is NAMI? 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 through two watershed events in 1999 - the White House Conference on Mental Health and the release of the Surgeon General's Report on Mental Health. Taken together, these two events brought together national leaders and the most comprehensive scientific report ever to substantiate what we have been saying for years - that severe mental illnesses are treatable brain disorders. This past year, three researchers whose work has been of direct relevance to mental illnesses were awarded the Nobel Prize in Medicine and Physiology. The Conference, the Report, and the Prize awards all are direct reflections of this Subcommittee's wise and substantial investment in biomedical research directed to the most complex organ in the human body, the brain.
NAMI 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 double 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-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.
NAMI applauds the bipartisan leadership of this Subcommittee in supporting increases for the NIH. NAMI also supports President Bush's FY 2002 budget request of $2.8 billion for the NIH - bringing the agency's total up to $23.1 billion. Further, we urge the Subcommittee to follow the recommendations of the scientific community and the Ad Hoc Group for Medical Research Funding and increase overall funding for NIH by $3.4 billion (a 16.5 percent boost) for fiscal year 2001, up to $23.7 billion. These increases would serve to keep Congress on pace to reach the bipartisan goal of doubling NIH funding by 2003.
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.
For NIMH, we also applaud this Subcommittee's leadership, demonstrated by your boosting its appropriations significantly in the past few years and by nearly 14 percent in fiscal year 2001, up to its current level of $1.107 billion. For FY 2002, NAMI urges the Subcommittee to fund the NIMH up to the "professional judgment" recommendation of $1.4 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 neuroscience's 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 efforts to led by 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 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? 1) More basic research on the brain and higher brain functioning. 2) More pre-clinical research on the genes, molecules, and brain regions involved in severe mental illnesses. 3) More clinical research aimed at understanding the best treatment for these serious disorders and translating that research into practice. 4) More research aimed at better understanding and treating these brain disorders in children. 5) Research aimed at diminishing relapse and disability in severe mental illnesses. 6) More research on how people with severe mental illnesses best receive treatment and services. 7) 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-morbid 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.
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 states continuing the long-term trend of reducing their psychiatric hospital beds and a growing number moving toward managed care systems, the federal investment in community-based care continues to grow in importance. For example, funding for the Mental Health Block Grant (MHBG) now constitutes as much as 40 percent of all non-institutional services spending in some states.
NAMI applauds the actions of this Subcommittee last year to increase the MHBG by $64 million, up to its current level of $420 million. This increase is a major step forward in helping states address the widening gaps in our nation's public mental illness treatment system. The consequences of the growing cracks in the public mental health system are readily apparent, not just to NAMI's consumer and family membership, but also to the public: the number of homeless adults on our nation's streets who receive no treatment services, well publicized tragic incidents involving acts of violence committed by 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.
The causes of these growing gaps in the services are varied and complicated: the trend toward privatizing state Medicaid programs through contracting with private managed care firms, cuts in Medicaid Disproportionate Share Hospital (DSH) funding and expansion of the mission of public mental health programs beyond serving the most severely disabled consumers. Moreover, in recent years state mental health agency budgets have been under increasing pressure as a result of forces beyond their control. Among these forces are separate U.S. Supreme Court's decisions in the Olmstead (requiring states to increase community placements for people with severe disabilities residing in institutions) and Hendricks (allowing states to commit sexually violent predators to state psychiatric hospitals) cases.
In addition to supporting additional funds for the MHBG, NAMI further recommends that the Subcommittee push states to target these increased resources to replication of evidence-based, outreach-oriented service delivery models for persons with severe mental illness in the community. In particular, NAMI urges that any and all increases in MHBG funding for FY 2002 be directed to assertive community treatment, including the Program of Assertive Community Treatment, or 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 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.
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. As I noted above, 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 states to use funding from both programs to promote integrated treatment services for persons with co-occuring mental illness and addictive disorders.
NAMI is also grateful for the support this Subcommittee has given to increases for the PATH program, increasing funding in FY 2001 by $6 million (up to its current level of $36.88 million). PATH is a formula grant program to the states to support local programs serving homeless persons with severe mental illness. Increasing PATH funding again in FY 2002 will help states and communities all across the country increase access to treatment and supports for the growing number of homeless with severe mental illnesses.
Mr. Chairman, as you know, last year Congress authorized a number of new programs at CMHS as part of the Childrens Health Act of 2000 (P.L. 106-310). While many of these new programs are not relevant to severe mental illness, some are. As is always the case, authorization of a new program does not result in actual funding until the Appropriations Committees actually allocate federal outlays. NAMI therefore urges the Subcommittee to move forward on the actions of your colleagues on the Commerce Committee and provide funding in FY 2002 for programs at CMHS authorized under P.L. 106-310 that are targeted to individuals with severe mental illnesses: emergency mental health centers (authorized at $10 million), integrated treatment for persons with co-occurring disorders (authorized at $40 million), training for emergency personnel (authorized at $5 million) and jail diversion (authorized at $25 million).
In addition, P.L. 106-310 authorized a new $75 million program at SAMHSA on suicide prevention among children and adolescents (Section 3111). NAMI supports full funding of this program in FY 2002, and urges that CMHS be directed to place the highest priority on screening for youth at high risk of suicide. NAMI believes that this goal is best accomplished through replication of evidence-based screening tools such as the Diagnostic Interview Schedule for Children (DISC) that has proven effective in assessing youth at the high risk of suicide. As recently as 1996, more teenagers and young adults died of suicide than from cancer, heart disease, AIDS, birth defects, stroke, pneumonia and influenza, and chronic lung disease combined. Suicide remains the second-leading cause of death among college students, the third-leading cause of death among those aged 15 to 24 years, and the fourth- leading cause of death among those aged 10. NAMI supports funding for this new program and evidence-based screening models as critical to national, state and local suicide prevention efforts.
Finally, as part of P.L. 106-310 Congress also overhauled CMHS's discretionary programs under the new "Priority Mental Health Needs of Regional and National Significance" line item. NAMI urges this Subcommittee to provide CMHS with further direction to ensure that all grants, contracts and initiatives funded under this program are disbursed toward a single objective: assisting state and local public mental health systems in replicating evidence-based programs serving children and adults with severe mental illnesses. NAMI believes strongly that CMHS's limited resources are most effectively spent when they are used to help bring advances in clinical and services research from the realm of peer reviewed journals to front-line providers in a way that addresses gaps in public programs and promotes recovery. Thus NAMI urges that the Subcommittee to push CMHS to place the highest priority on replication of evidence-based programs that target populations that represent the most pressing public health needs, particularly individuals caught in the tragic cycle of homelessness, jail, the streets and psychiatric hospitals.
Mr. Chairman, thank you for the opportunity to offer NAMI's views on FY 2002 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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