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Federal Funding for Mental Illness Research

NAMI’s Advocacy Goals and Strategies

NAMI Supports Increases for National Institute of Mental Health (NIMH) Research Funding for FY 2004

NIMH is the only federal agency whose main objective is to fund biomedical research into serious mental illnesses. NIMH supports and conducts an integrated program of basic and clinical research and research training in biology, neuroscience, and epidemiology. Research initiatives include programs into the major brain disorders such as schizophrenia, major depression, bipolar disorder, panic disorder, and obsessive-compulsive disorder.

For FY 2004, the President is proposing $1.382 billion for scientific and clinical research at NIMH. This is a $33 million increase over the agency’s FY 2003 appropriation of $1.349 billion. The President is proposing an overall 2% increase for the entire $27 billion budget of the NIH. FY 2003 marked the end of the 5-year bipartisan effort in Congress to double the overall NIH budget (up from $13.5 billion in FY 1998, to $27 billion in FY 2003).

NAMI is very concerned that increases for medical research at NIH in 2004 and 2005 will be held far below the increases Congress enacted from 1998 to 2002 – perhaps as low as 2% (barely enough to cover inflation and below expected increases in the cost of conducting clinical research). This decline in budget increases could have a devastating impact on the ability of NIMH (and NIH as a whole) to sustain the ongoing multi-year research grants that have been initiated over the past 2-3 years. This is especially the case with new research grants that have been initiated in conjunction with NIMH’s new research plan on mood disorders (including new research underway on bipolar disorder). NAMI therefore supports the efforts of Senators Arlen Specter (R-PA) and Tom Harkin (D-IA) to push for an 8.5% increase for NIH in FY 2004 and move toward an overall tripling of medical research by FY 2008.

NAMI’s Advocacy Goals and Strategies

NAMI strongly supports the federal investment in biomedical research into brain disorders and genetics and support for initiatives focused on neural receptors, receptor subtypes, and modulators. NAMI congratulates Congress and President Bush for completing the doubling of NIH in FY 2003 and urges that this commitment to research be sustained in FY2004 and beyond. NAMI also supports greater attention at NIMH on the most serious brain disorders—including schizophrenia, major depression and bipolar disorder—in its research portfolio.

The Case for Increased Federal Investment in Mental Illness Research

  • Research is the ultimate source of hope for NAMI consumers and family members. Already, research has yielded tremendous advances, underscored the fact that severe mental illnesses are brain disorders, and provided amazing treatment advances. The results to date have fueled NAMI’s advocacy to end stigma and discrimination against people with severe mental illnesses. And, perhaps more importantly, the results have made recovery a real possibility for individuals who suffer from these chronic, disabling, and not infrequently life-threatening diseases.
  • Further research is imperative if we are to prevent the next generation from suffering. Much has to be learned. The causes and mechanisms of diseases such as schizophrenia and bipolar disorder are mostly unknown. We do not yet have laboratory tests that can diagnose these illnesses. No genes have been indisputably identified. There are no side-effect free treatments. And of course there is no primary preventive measure or cure on the horizon.
  • Treatment is imperfect; it does not work well for all individuals living with these brain diseases. There are no cures for severe mental illnesses, and existing treatments and services shown to be effective are all too often not available to the people who need and deserve them. While steady research-funding gains have been achieved, NAMI believes that severe mental illness research, from the most basic to services research, remains underfunded, given the tremendous scientific opportunities that exist and the severe burden that these diseases present to the public as well as to our families.
  • The public health burden associated with severe mental illness is enormous. A 1996 independent study by the World Bank and World Health Organization (DALY: Disability Adjusted Life Years) found that four of the top ten causes of disability worldwide are severe mental illnesses: major depression, bipolar disorder, schizophrenia, and obsessive-compulsive disorder. These brain disorders account for an estimated 20 percent of total disability resulting from all diseases and injuries.

Where Should Funding at NIMH Be Directed

  • Greater Focus & Accountability on Severe Mental Illness – NAMI believes that more focus is needed at NIMH on severe mental illness research at all. NIMH’s origins spring from a congressional and public desire to enhance the treatment of severe mental illnesses. Research at all levels should be closely linked, so that advances rapidly translate into better treatment for individuals living with these illnesses. NAMI therefore urges Congress to require NIMH to provide an accounting of new and existing research grants broken down by specific illnesses.
  • Basic Neuroscience – NIMH needs to continue progress that has been made in unraveling the mysteries of molecules, genes, and brain interconnections related to higher brain functioning in health and serious disease.
  • Bridging of Research and Basic Neuroscience to Behavioral Research and Clinical Study of Severe Mental Illness – While there has been an explosion of basic neuroscience research and a decade long significant increase in psychological studies, often integrated with basic neurosciences, there has been relatively limited integration of the best neuroscience with the clinical investigation of serious brain disorders. The best of neuroscience must be better wed to mental illness research and mental illness studies must win a bigger portion of NIMH’s budget pie.
  • Treatment Research – Currently there is a lack of understanding about which treatments work best for which patients, in what combination, and with what risks. NIMH has invested in significant research to improve this understanding and it should be continued and fortified in the current budget. But new treatments must be developed as well.

  • Services Implementation – There are many important, even crucial research questions relevant to the treatment system that serves individuals with severe mental illnesses—ranging from improving the provision of evidence-based care to identifying exactly how much public monies are being spent on a treatment system that more often than not is failing.
  • Consumer and Family Involvement in Research – All of these efforts at NIMH must be done with a greater involvement with and accountability to those patients with severe illnesses and their families. Recent efforts at NIMH have moved in this direction, but more needs to be done to integrate families and patients into annual reporting and strategic planning on research investments and accomplishments.

      June 2003

For more information about NAMI’s activities on this issue, please call Andrew Sperling at 703-516-7222. . All media representatives, please call NAMI’s communications staff at 703/516-7963.


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