Statement on Fiscal Year 2002 Budget
National Institutes of Health and National Institute of Mental Health

Submitted to the House Appropriations Subcommittee on Labor, 
Health and Human Services, and Education
March 21, 2001

Published in the Congressional Record*
April 24, 2001

Good afternoon. Chairman Regula, Ranking Member Obey, and distinguished members of the Subcommittee, thank you for the opportunity to testify today. My name is Lydia Lewis, and I am the Executive Director of the Depression and Bipolar Support Alliance (formerly National Depressive and Manic-Depressive Association)  (DBSA). We are pleased to have this opportunity to testify on fiscal year 2002 funding for mental health research supported by the National Institutes of Health (NIH) and the National Institute of Mental Health (NIMH.)

DBSA has been gratified to see the overall NIH budget increase over the past three years, including last year's nearly $2.5 billion increase, and we urge the continued full funding of these research priorities in order to maintain an active, progressive research agenda. We fully support President Bush's FY 2002 budget request of a $2.8 billion increase above the 2001 funding level for NIH, to a total of $23.1 billion, and we applaud the President's stated initiative to double NIH's 1998 $13.6 billion funding level by 2003.

With nearly 400 patient-run support groups in every major metropolitan area, DBSA is the nation's largest patient-directed, illness-specific organization. We are committed to advocating for research toward the elimination of mood disorders; educating patients, professionals and the public about the nature of depression and manic-depression as treatable medical diseases; fostering self-help; eliminating discrimination and stigma; and improving access to care. We have a distinguished Scientific Advisory Board of nearly 65 leading researchers and clinicians in the field of mood disorders which reviews all of our materials for medical and scientific accuracy and provides critical and timely advice on important research opportunities and treatment breakthroughs. While I am here today to testify on behalf of DBSA, I know personally what it is like to battle depression every day, to fight the urge to end my life. I myself suffer from the disease. It's a dreadful way to live.

COMBATING THE STIGMA OF MENTAL ILLNESS

The facts are staggering. More than 20 million American adults-10% of the U.S. population - suffer from unipolar or major depression every year. An additional 2.3 million people suffer from bipolar disorder, also known as manic-depression. According to a study done in 2000 by the World Health Organization, the World Bank, and the Harvard School of Public Health, unipolar major depression is the leading cause of disability in the world today. It also found that mental health has long been misunderstood. In fact, mental illness accounts for more than 15% of the burden of disease in established market economies such as the United States. This is more than the disease burden caused by all cancers combined.

Women are more than twice as likely as men to experience depression, and one out of every four American women will experience a major depressive episode in her lifetime. Ten to fifteen percent of women develop postpartum depression the first year after birth -- the most underdiagnosed obstetrical complication in America. Among the many consequences of this illness is the depressed new mother's inability to bond with and nurture her child. Experts say these babies are at increased risk of depression throughout life.

Coping with these devastating illnesses is a tragic, exhausting and difficult way to live. Despite these facts, stigmatizing mental illness is a common occurrence in the United States. Labeling people with mental illness has been a part of the national consciousness for far too long, and continues to send the message that devaluing mental illness is acceptable. An estimated 50 million Americans experience a mental disorder in any given year, and only one-fourth of them actually receive mental health and other services. Two out of three people with mood disorders do not get proper treatment because their symptoms are not recognized, are misdiagnosed or, due to the stigma associated with mental illness, are blamed on personal weakness. Far too often, the fear of being judged or abandoned wins out over the need to seek medical attention, and the person remains untreated.

Equally devastating is the stigma associated with the research of mood disorders and other mental illnesses. Research in behavioral science is as critical as that undertaken for any other illness. Our understanding of the brain is extremely limited and will remain so for decades unless much greater financial support is provided. Neuroscience research is also critically important to understand the mechanisms in the brain that lead to these illnesses. When we begin to understand these, we will be able to develop more effective and rational ways to treat, and hopefully cure, mental illness.

Increased public awareness and understanding of mood disorders will contribute significantly to improved diagnosis and treatment rates for these illnesses. Progress is slowly being made, and we encourage the Subcommittee to continue to fully fund programs that address the stigma and isolation associated with mental illness. We must, as NIMH Director Dr. Steven Hyman has said, sound the alarm that we are in the midst of a public health crisis - that our glaring misperceptions about and undertreatment of mental illness, especially for children and minority populations, represents nothing less than a national health emergency.

PROGRESS IN RESEARCH AND DIAGNOSIS

Mood disorders and other mental illnesses kill people every day. Depression is the leading cause of suicide in the United States. One in every five bipolar sufferers takes his or her own life, and the Centers for Disease Control report that suicide is the third-leading cause of death among 15 to 24 year old Americans. For every two homicides committed in the United States, there are three suicides.

We know that science destigmatizes, and as more people come to understand that mood disorders are treatable medical illnesses, we can make significant reductions in both their human and economic costs. The Surgeon General released a groundbreaking report on mental illness, an important first step in this process. The study concluded that these diseases are real, treatable, and affect the most vital organ in the body-the brain. Research supported by NIMH has lead to new and more effective medications for both depression and manic depression. We have a much better understanding of these illnesses, and are learning more about their impact on cardiovascular disease and stroke.

The Surgeon General's 1999 report was the first ever, from that office, on mental illness. While this is a shameful statistic- by comparison, there have been 23 Surgeon General's reports on tobacco since 1964 - DBSA is nevertheless encouraged by this development, and we hope to take advantage of this turning tide. Finally, there is hope that these disorders will start to be seen by Americans for what they are - real diseases. But we urgently need to increase funding for NIMH and other research institutions to ensure that any forward momentum is not lost.

CLINICAL RESEARCH

DBSA plays an important role in several large NIMH-sponsored clinical trials. Our consumer representatives are members of oversight committees for trials studying the effectiveness of treatments for bipolar disorder, the study of treatment of adolescents with depression, and the study of treatment of individuals with depression who do not benefit from standard initial treatments. DBSA participates in the oversight of these trials to ensure that the first priority of all clinical trials is the safety of the patient. One of our primary objectives is to limit the number of people exposed to placebo and limit the duration of their exposure without compromising scientific validity.

MOOD DISORDERS IN CHILDREN AND ADOLESCENTS

The issue of mood disorders in children and adolescents is of particular concern to DBSA, and we support the aggressive research being done by NIMH in this area. Nearly 2.5 percent of children and 8.3 percent of adolescents suffer from clinical depression. There has, however, been virtually no research to date on bipolar disorders in children, despite evidence that families wait an average of 10 years before receiving the proper diagnosis after seeking help. We know that up to 90 percent of bipolar disorders start before age 20, meaning more high school dropouts, more illegal drug and alcohol use, higher teen pregnancy rates, more teen violence and more adolescent suicides. The costs of waiting for proper treatment do not just affect the individual sufferer, but society as a whole.

We fully support NIMH plans to further expand clinical trials of treatments for mental illnesses, including the exploration of depression in young children. We urge a significant increase in funding for research of mood disorders in children and adolescents with special emphasis on the efficacy and safety of current treatments, the epidemiology of these illnesses and improved diagnostic tools.

We are pleased that NIMH played a lead role in the Surgeon General's report on youth violence. With further research into the relationship between mental disorders and violence, we are hopeful that tragedies like the recent school shootings in California and across the country can be prevented in the future. Many of the perpetrators of these shootings exhibited symptoms of mental illness, and further research into the connection between behavior problems and anxiety disorders, depression, and suicidal ideation is critical. DBSA is also pleased with the coordination between NIMH and other federal agencies, such as the Centers for Disease Control and the departments of education and justice, and continued information sharing about the relationship between mental illnesses and violence.

BIPOLAR (MANIC-DEPRESSION) DISORDER

The World Health Organization has identified bipolar disorder as the seventh-ranked cause of disability in the world today. Nearly one in 100 Americans suffers from manic- depression, yet research in this area has been continually under funded.

That is slowly changing. NIMH's current Systemic Treatment Enhancement Program for Bipolar Disorder (STEP-BD) is a landmark study of 5,000 people with bipolar disorder, the largest psychiatric trial ever held. While this is a critically important study, it also underscores the unfortunate circumstance that mental illnesses remain woefully under funded. The STEP-BD trial has a budget of just $20 million. A brief check of, for example, the National Cancer Institute programs will reveal that this is an unjustly small allocation for researching this pervasive and fatal disease. In fact, in FY 1999, NIMH spent only $46 million on bipolar research. Congress must continue to increase its investment in this important area of mental health research.

THE IMPACT OF DEPRESSION ON OTHER ILLNESSES

DBSA is pleased to be participating next week in an important NIMH forum on improving health outcomes for major diseases such as cancer, diabetes, heart disease, stroke, AIDS, and Parkinson's through the effective treatment of co-occurring depression. The forum will highlight scientific advances linking depression and other illnesses, and the role that treating depression plays in improving the course of the co-occurring disease. Participants will also focus on ideas for shaping the Institute's research agenda, and further educational and communication plans for improving health care. DBSA applauds NIMH for its efforts to include the public in its agenda setting.

Important new research has shown that treatment of co-occurring depression often improves health outcomes for patients with a wide variety of diseases. Researchers are tracing various aspects of depression, that may affect illnesses as varied as neurological diseases such as Parkinson's disease, diseases of the cardiovascular system, and diseases involving suppression of the immune system, such as cancer and AIDS. It appears that depression is an important risk factor for heart disease. In a recent study, it was found that heart patients who had depression were four times as likely to die in the next six months as those who were not depressed. There are also studies linking depression and obesity and diabetes, as well as findings showing common genetic patterns in diabetes and depression.

OTHER RESEARCH NEEDS

More research is needed on the medications for mental illness. There has not been a drug developed specifically for bipolar disorder since the discovery of lithium more than 50 years ago. In addition, it is not fully understood how psychiatric drugs work in the brain. A person often must choose between lessening suicidal thoughts or getting life threatening rashes, seizures, or lithium poisoning. So many of us have to choose a life without libido or a life of fatigue, exacerbated by insomnia. Although these medications are effective for many people, no one should have to make choices like these. Every day technology and science bring us further in understanding the brain, and these kinds of successes build upon each other.

DBSA is therefore particularly pleased to see the NIMH's renewed commitment to research of more viable treatment options for depression and bipolar disorder and we hope that the Congress will continue to fund important studies in this area. Great strides are being made, but it is critical that even more research is done on how different medicines affect both the body and the mind.

CONCLUSION

We urge the National Institutes of Health and the National Institute of Mental Health to continue to expand and enhance behavioral science, neuroscience and genetics research of mental illnesses. We commend the Subcommittee's past support of NIH and NIMH, and look forward to continuing to work with you in the next year to ensure renewed commitment to full funding of mental health research. We are confident that together, our efforts will mean real treatment options, an end to the stigma associated with mental illness, lives saved and a far more productive America. Thank you again for the opportunity to testify on issues critical to the health and well being of all Americans.

* This text was edited in November 2002 to reflect DBSA's name change.