TESTIMONY OF LYDIA LEWIS
PRESIDENT, DEPRESSION AND BIPOLAR SUPPORT ALLIANCE
Chairman Regula, Ranking Member Obey, and distinguished members of the Subcommittee. My name is Lydia Lewis, and I am the President of the Depression and Bipolar Support Alliance (DBSA), formerly known as the National Depressive and Manic-Depressive Association. Our organization appreciates the opportunity to submit testimony in support of increased funding of the National Institutes of Health (NIH) and the National Institute of Mental Health (NIMH) as proposed in the President's Fiscal Year 2004 budget request.

Astonishingly, one out of four people in the United States still believe that people with untreated mood disorders are dangerous, according to a recent public survey conducted by DBSA. Clearly, stigma is still an issue that people living with mental illness face every day. This is one of the reasons that DBSA changed its name late last year. Our Board of Directors recognized that for many of the 20 million American adults living with depression and the 10 million adults living with bipolar disorder, the term "manic depression" is frightening and keeps many people from contacting us for help. Since our name change, we have found that our use of the term, bipolar disorder, which has gained widespread usage among clinical and medical professionals in recent years, has made it easier for many people to contact us for assistance. And so, Mr. Chairman and members of the Committee, please know that even at a time when our society goes to great lengths to enhance understanding and remove stigma, for many people living with depression and bipolar disorder, that has not yet happened.

Take, for example, the experiences of one, 43-year-old woman who was diagnosed with bipolar disorder and turned to us for help. She lives in a small community where, she told us, people "see any kind of mental problems as being crazy."

"I try to hold my head up," she wrote us, "but there are times that it is unbearable. The way people look at you and whisper or just have nothing to do with you. I am not crazy. I have been medicated for six years, and I see my doctor. I am not to blame."

Mental illness should be no different than physical illness in our society's perceptions; people do not choose to be mentally ill. It is this type of stigma that DBSA is committed to removing and asks that members of Congress work with us to do so.

DBSA is the leading patient-directed national organization focusing on the most prevalent mental illnesses - depression and bipolar disorder. DBSA's mission is to improve the lives of people living with mood disorders. This not-for-profit organization fosters an environment of understanding about the impact and management of these life-threatening illnesses by providing up-to-date, scientifically based tools and information, written in easy to understand language. DBSA has more than 1,000 peer-run support groups across the country. Our organization works to ensure that people living with mood disorders are treated equitably Over two million people request and receive information and assistance from DBSA each year. Assisted by a Scientific Advisory Board, comprised of the leading researchers and clinicians in the field of mood disorders, DBSA supports research to promote more timely diagnosis and to develop more effective and tolerable treatments and to discover cures.

In that regard, we are grateful for this Committee's support over the past five years for the much needed doubling of funding for the NIH. This commitment was a resounding recognition by Congress of the pressing need to address the serious public health issues related to mental health.

NIH AND NIMH BUDGET REQUEST
Far too often, businesses and government agencies fail to recognize the very real, economic impact that results when individuals with depression or bipolar disorder fail to seek treatment, either through fear or a lack of sufficient information. An estimated 44 million Americans experience a mental disorder in any given year and only one-fourth of them actually receive mental health and other services. The World Health Organization has pronounced unipolar depression as the leading cause of disability in the world. In established market economies like the United States, mental illness accounts for more than 15 percent of the burden of disease. That is more than the disease burden caused by the combination of every form of cancer. One out of every four American women will experience major depression in her lifetime, and 10 to 15 percent of women develop postpartum depression the first year after giving birth. As a result, many of these mothers are unable to adequately bond with their babies, increasing the risk of future depression in their children. In fact, experts say these babies are at an increased risk of depression throughout life. In all, by some estimates the economic toll of untreated mental illness, through absenteeism or interrelated illnesses, is roughly between $50 and $80 billion annually from lost work days and other related costs.

This is a burden our nation can avoid through a commitment to sound research, accessible mental health services, aggressive programs to reach out to individuals with mood disorders and by removing the stigma of mental illness. DBSA supports the President's request to Congress for $27.89 billion in funding for the NIH, including $1.38 billion for the NIMH, both of which represent modest funding increases above the current fiscal year. In light of DBSA's mission, we would, of course, be lax in our duty if we did not urge the Committee to consider raising these amounts. However, we recognize the significant gains that have been made in the past five years and the fiscal challenges that Congress currently faces. I would simply ask that, at a minimum, the Committee continue its longstanding commitment to providing the resources to combat mental illness and to avoid any setback to future years' funding levels for NIH and NIMH.

MENTAL HEALTH INITIATIVES IN CONGRESS AND THE EXECUTIVE BRANCH
The New Freedom Commission on Mental Health appointed by the President has recently completed its series of public hearings as part of its study of the country's mental health service delivery system, including both the private and public sector providers. The Commission was tasked with advising the President on methods to improve the system so that adults with serious mental illness and children with serious emotional disturbances can live, work, learn, and participate fully in their communities. As the committee is aware, this Commission was the first comprehensive study of the nation's public and private mental health service delivery aimed at improving the mental health delivery system. DBSA commends the President for his commitment in this area and for affirming that with proper treatment, individuals living with mental illness can, indeed, participate fully in society.

Among the initial findings of the Commission are a number of areas that DBSA recognizes and supports, including the assertion that "mental health is essential to health." DBSA has been very active in drawing attention to the fact that mental illness does not occur in isolation, but often instead with such illnesses and conditions as heart disease, stroke, immune disorders, diabetes, cancer and neurological illnesses like Alzheimer's and Parkinson's disease.

This linkage, known as co-morbid illness, demands more attention from both policy makers and the medical community. Currently, it is commonly believed that depression is an inevitable part of chronic illness. The truth is, depression is a separate illness that frequently co-occurs with illnesses like diabetes and coronary disease. Research has indicated that depression often precedes and helps trigger the onset of diabetes. And the Journal of American Medicine has reported that "major depression may play a role in an increased risk of death and hospital readmissions for patients with congestive heart failure." Overall, medical treatments have a greater success rate if co-occurring depression is treated. More research is needed to determine the causal relationships involved in co-morbid illness.

In its outline of the final report that is to be submitted shortly to the President, the New Freedom Commission noted another area in which DBSA has been active: co-occurring disorders pertaining to drug and alcohol abuse. In my testimony before the Commission in September of last year, I focused my remarks on the scope of this problem. The rate of alcohol and drug abuse in the general population is approximately six percent. Among individuals with bipolar disorder, that rate increases to between fifty and sixty percent. The Substance Abuse and Mental Health Services Administration (SAMHSA) recently reported to Congress that seven to ten million individuals in the United States have at least one mental disorder as well as an alcohol or drug use disorder. Many researchers and clinicians believe that both disorders must be addressed as primary illnesses and treated as such. The SAMHSA report discussed a number of evidence-based interventions and programs that demonstrate improved outcomes with integrated services and treatments.

The New Freedom Commission on Mental Health and SAMSHA both made recommendations for treatment of co-occurring disorders that comport with and, in fact, highlight the significance of DBSA's support services. These recommendations involve integrating peer support and consumer input into the treatment process. The Commission took special note of the effectiveness of peer support in the treatment process, calling for these services to be fully integrated into the continuum of community mental health care.

Meanwhile, the very foundation of DBSA as a patient-directed organization is mirrored in SAMHSA's findings that "consumers and recovering individuals bring special characteristics that support the recovery of individuals from both substance and mental disorders: subjective knowledge of the service delivery system, empathy for the struggles related to the process of recovery, a capacity to build rapport and fundamental respect for the integrity of each person."

I urge the Committee to support SAMHSA's recommendations, including the establishment of a national center for technical assistance, treatment, prevention and cross-training for co-occurring disorders that will ultimately improve the quality of life for patients and their families.

Another worthy recommendation of the President's New Freedom Commission on Mental Health was to accelerate research to enhance prevention of, recovery from and ultimate discovery of cures for mental illnesses. There are many others, which I will not address here, but I look forward to the final report of the Commission.

In Congress, DBSA continues to urge the passage of H.R. 953, the Senator Paul Wellstone Mental Health Equitable Treatment Act, and its companion Senate bill, S. 486. A majority of the members of the House and Senate are now cosponsors of this legislation. The President has said he supports it, yet this legislation continues to remain on hold in Congress. There is no scientific, financial or ethical justification for the artificial distinction between physical and mental illness in insurance coverage.

Moreover, this inequity is one of the biggest remaining obstacles to removing the stigma that still surrounds mental illness.

The same can be said for a similar inequity for co-payments under Medicare for mental health services. At a time when depression and bipolar disorder are recognized as serious health problems in the elderly population, Medicare recipients who seek mental health services must pay 50 percent of the fees for those services. Individuals seeking Medicare payments for treatment of other illnesses pay only 20 percent of a physician's fee. DBSA supports pending legislative initiatives in Congress to provide parity for Medicare co-payments.

As noted earlier, postpartum depression among new mothers, the most under diagnosed obstetrical complication in America, is a significant problem for both affected women and their children. H.R. 846 and its companion bill in the Senate, S. 450, seek to direct funds for NIH research related to postpartum depression and postpartum psychosis. DBSA strongly supports this legislation.

In conclusion, we must be pro-active and committed to addressing mental illness in this country with no less vigor than we have for other public health issues. Removing stigma is the first step in getting individuals to seek the help they need. That is why the issue of parity in insurance coverage and federal health programs is so key for the Congress to address. We must be committed to providing access to mental health services. And we must not abandon our support for sound research at the NIH and NIMH to prevent, provide recovery from and find cures for mental illness. Each year, 30,000 people die by suicide in our country - even more than die by homicide. We believe many of these unnecessary and tragic losses can be prevented through increased availability of treatment and cutting-edge research to expand treatment options.

Mental illness is not solely an issue reflected in the toll that it takes, when not addressed, on the lives of individuals and their families. It is a national problem whose less apparent but still very real impacts unnecessarily threaten the employment and financial health of the country. There are very real financial costs that arise from untreated mental illness, through lost productivity, absenteeism and co-occurring illnesses. And, of course, there are millions of real people whose lives are affected. I thank the committee for recognizing that untreated mental illness is a national problem and that addressing it not only is fiscally sound public policy, it is the right thing to do.

I appreciate the opportunity to submit this testimony and thank the Chair, Ranking Member and members of the Committee.