Statement Of Jim McNulty On Research Funding
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
APRIL 11, 2000
Chairman Porter and members of the Subcommittee, I am Jim McNulty, of Bristol, Rhode Island, a member of the Board of Directors of the National Alliance for the Mentally Ill (NAMI). I am pleased today to offer NAMI's views on the Subcommittee's FY 2001 bill that are of tremendous concern to people with serious brain disorders and their families.
Who is NAMI?
NAMI is the nation's largest national organization, 210,000 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.
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.
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 on June 7 and the release of the Surgeon General's Report on Mental health on December 13. 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 brain disorders that are treatable. As the Surgeon General noted, current success rates for treating schizophrenia are near 60 percent. Likewise, the success rate for bipolar disorder has risen in recent years and now approaches 80 percent. For major depression, the rate has climbed to nearly 65 percent. These recent advances would not have been possible without substantial investment in biomedical research directed to the most complex organ in the human body, the brain.
Severe Mental Illness Research at the NIH
Mr. Chairman, I would like to thank you for your six years of service as Chairman of the House Labor-HHS-Education Appropriations Subcommittee. NAMI appreciates the leadership you have displayed over the past six years in bringing significant increases to the National Institutes of Health (NIH) budget. Biomedical research and the NIH are central to improved treatments for severe mental illnesses and ultimately the cure of these disabling brain disorders. NAMI's consumer and family membership is deeply grateful for the bipartisan effort you have led as Chairman of this Subcommittee to make biomedical research a top national priority. We regret that this is your final year as Chairman and wish you and your family all the best in retirement and life beyond Congress. Your legacy to the American people will certainly be felt for decades to come as scientific discovery, made possible through your support for the NIH, brings new treatments to people living with serious brain disorders such as schizophrenia and bipolar disorder.
The year 2000 marks the end of the Decade of the Brain-an initiative that grew out of the leadership of your late colleagues Chairman Bill Natcher and Ranking Member Silvio Conte-it is important for us to put into perspective the gains we have witnessed in brain science that have benefited people with serious brain diseases such as schizophrenia and other severe mental illnesses. We also need to plan for the future gains that are so necessary.
I noted earlier that severe mental illnesses are often quite effectively treated. In fact, 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.
But 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.
Treatment for mental illnesses, while impressive and comparable to some of the best treatments in all of medicine, are still unacceptable for patients, families, and our society. Many people with severe 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 which has been pinpointed to specific higher regions of the brain, still often fail to achieve much gain in treatment. For children, 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.
The national need for severe mental illness research is most starkly demonstrated by particularly terrible statistics. Our nation stands in the midst of a virtual catastrophe: a suicide epidemic. 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.
That severe mental illness research ought to be a priority for our nation is also 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 requires that research on these diseases be a high priority, especially given the scientific opportunities that exist in the brain sciences. Let me concentrate now on what we think are sound goals for NIH and NIMH, respectively, so that we can bring the full force of our research to bear on this most important health emergency.
NIH Investment: A Call for Increased Funding & Accountability
NAMI applauds your leadership in supporting increases for the NIH. 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 $2.7 billion (a 15 percent boost) for fiscal year 2001, up to $20.5 billion. Such an increase would 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, we urge you 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 and by nearly 15 percent in fiscal year 2000, up to its current level of $978.4 million. For FY 2001, NAMI urges the Subcommittee to fund the NIMH up to the "professional judgment" recommendation of $1.169 billion. While NAMI applauds the President's request to increase NIMH's budget by 5.9 percent, up to $1.031 billion, we believe 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 will undergird the new treatment frontier for severe mental illnesses and also with strong commitments to serious brain disorders 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 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. We agree 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 our members, the more than 210,000 Americans facing a serious brain disorder? 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 and 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.
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 at SAMHSA. Federal support for community-based care is a critical resource for people with the most severe mental illnesses. With many states 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.
In the President's FY 2001 budget proposal, a $60 million increase is proposed for the MHBG (up from its FY 2000 appropriation of $356 million, to $416 million). While NAMI is extremely grateful for the $68 million increase that the Subcommittee enacted for FY 2000, the reality is that this boost in resources is not enough to keep pace with the continued widening of gaps in the public mental illness treatment system in many states. The consequences of these emerging cracks in the service system are readily apparent, not just to NAMI's 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.
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 restrictions on eligibility for SSI and SSDI for people whose disability is based in part on drug abuse or alcoholism and a 1997 U.S. Supreme Court decision allowing states to commit sexually violent predators to state hospitals.
In addition to supporting the Administration's proposed increase, NAMI further recommends that the Subcommittee target all additional funds for the MHBG in FY 2001 to state and local evidence-based, outreach-oriented service delivery models for persons with severe mental illness in the community. In particular, NAMI urges that any increase in MHBG funding 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.
In addition, 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 pleased that the President's FY 2001 budget proposes another $5 million increase for the PATH program (up from its current $30 million, to $35 million). PATH is a formula grant program to the states to support local programs serving homeless persons with severe mental illness. This increase in PATH funding will help 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, the President's FY 2001 budget proposes a new unauthorized line-item as part of the CMHS's programs - Targeted Capacity Expansion (TCE). According to CMHS's own justification for this request, this new $30 million is for undefined prevention and early intervention services for persons who are not diagnosed with a severe mental illness who receive services in "non-mental health settings." While NAMI recognizes that such a new program could offer benefit to many communities, we believe a more pressing public health concern is the alarming trend of "criminalization" of severe mental illness.
NAMI therefore urges that instead of establishing a new TCE line item within the CMHS budget, the Subcommittee instead direct these funds to a new initiative within the agency's Knowledge, Development and Application (KDA) program on criminalization. Such a program should be directed toward innovative state and local programs that 1) divert mentally ill, non-violent criminal defendants and convicts into treatment programs, 2) replicate successful models such as mental health courts, and 3) train police officers in how to appropriately interact with suspects with severe mental illnesses. NAMI is making a similar request to your colleagues at the Commerce-Justice-State Appropriations Subcommittee for a program of similar scope and purpose at the Bureau of Justice Assistance.
In January, The Charlotte Observer ran a five-part investigative series that reported since 1994, at least 35 people with mental or developmental disabilities have died under questionable circumstances while under the care of public and private mental health facilities in North Carolina. Deaths were attributed to suicide, murder, neglect, scalding, and falls, and most went unnoticed by the agencies authorized with investigating such deaths. NAMI recommends that resources be targeted to fund Protection and Advocacy agencies to investigate questionable deaths and serious injuries, like those deaths in North Carolina that have resulted from restraint abuse.
Unfortunately, the Charlotte Observer series is just one of several investigative media reports over the last year that have exposed systemic failures to provide adequate treatments and services to individuals with severe and persistent mental illnesses. The Los Angeles Times, The New York Times, The Hartford Courant, and The Orlando Sentinel have revealed a pervasive pattern of neglect by state mental health systems. The need for further investigation, a system of accountability and mandatory reporting of deaths and serious injuries will help ensure that individuals with mental illnesses don't lose their lives in the very places designed to help them.
DOL & SSA
Finally, beyond the NAMI's traditional concerns with NIMH and CMHS, I would like to note two other departments under the Subcommittee's jurisdiction that are of concern to NAMI - the Department of Labor (DoL) and the Social Security Administration (SSA). With regard to DoL, NAMI would like to go on record in support of the Administration request to establish a new Assistant Secretary position for disability policy. At SSA, NAMI would like to express our strong support for full implementation of the Ticket to Work and Work Incentives Improvement Act (TWWIIA) and FY 2001 funding for the new work incentives planning and outreach program. NAMI would like to thank you for your strong support for TWWIIA last year. Enactment of both these proposals will help ensure that progress is made in addressing the barriers to work that still leave more than 80 percent of adults with severe mental illnesses unemployed and out of the economic mainstream.
Mr. Chairman, thank you for the opportunity to offer NAMI's views on FY 2001 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 people living with severe mental illness.