NAMI CEO Addresses Labor–HHS–Education Subcommittee on Appropriations

Apr 18, 2016









APRIL 15, 2016

Chairman Cole and members of the Subcommittee, I am Mary Giliberti, Chief Executive Officer of NAMI (the National Alliance on Mental Illness). I am pleased, today, to offer NAMI's views on the Subcommittee's upcoming FY 2017 bill. NAMI is the nation’s largest grassroots advocacy organization dedicated to building better lives for the millions of Americans affected by mental illness.

Through NAMI State Organizations and over 900 NAMI Affiliates across the country, we raise awareness and provide support, education and advocacy on behalf of people living with mental health conditions and their families.

An estimated 1 in 5 people live with a mental health condition in the United States which means more than 43 million Americans are affected. Almost 10 million of those live with a serious mental illness, such as schizophrenia, bipolar disorder, and major depression. People with mental health conditions are our neighbors, our families and ourselves. They work in all sectors of the U.S. economy, from the boardroom to the factory floor, from academia to art.

But, without investment in research and appropriate services and supports, the social and economic costs associated with mental health conditions are tremendous.

Over 42,000 American lives are lost each year to suicide, more than 2 ½ times the number of lives lost to homicide. Suicide is the 2nd leading cause of death for Americans age 15-24 and the 10th leading cause of death for adults.

Mental illness is the 3rd most costly medical condition in terms of overall health care expenditures, behind only heart conditions and traumatic injury. The direct and indirect financial costs associated with mental illness in the U.S. has been estimated to be well over $300 billion annually.

Investing in mental health research and services and supports can make these startling statistics a thing of the past and improve the lives of millions of Americans who live with mental health conditions and their families. NAMI views these investments as the highest priority for our nation and this Subcommittee.

National Institute of Mental Health (NIMH) Research Funding

As a member of the Ad Hoc Group for Medical Research Funding, NAMI supports an overall allocation of no less than $34.5 billion for the National Institutes of Health (NIH). This $2.4 billion increase represents 5% real growth above the projected rate of biomedical inflation and will help ensure that NIH-funded research can continue to improve our nation’s health and enhance our competitiveness in today’s global information and innovation-based economy. As you know, the President is requesting flat funding for the National Institute for Mental Health (NIMH) for FY 2017 at $1.519 billion. This is extremely disappointing, although the President is requesting an additional $45 million for the BRAIN Initiative. NAMI is extremely grateful for the strong bipartisan support for NIMH that resulted in the $85 million increase for FY 2016. It is critical that this momentum continues in FY 2017.

Supporting the NIMH Strategic Plan

NAMI supports the current five-year NIMH Strategic Plan and its four overarching goals:

Accelerating the Pace of Psychiatric Drug Discovery

In NAMI’s view, there is an urgent need for new medications to treat serious mental illness. Existing medications can be helpful, but they often have significant limitations; in some cases requiring weeks to take effect, failing to relieve symptoms in a significant proportion of patients, or resulting in debilitating side effects. However, developing new medications is a lengthy and expensive process. Many promising compounds fail to prove effective in clinical testing after years of preliminary research. To address this urgent issue, NAMI is encouraging NIMH to accelerate the pace of drug discovery through an ‘experimental medicine’ approach to evaluate novel interventions for mental illnesses. This “fast-fail” strategy is designed not only to identify quickly candidates that merit more extensive testing, but also to identify targets in the brain for the development of additional candidate compounds. Through small trials focused on proof-of-concept experimental medicine paradigms, we can make progress to demonstrate target engagement, safety, and early signs of efficacy.

Advancing Services and Intervention Research

NAMI enthusiastically supports the NIMH Recovery After an Initial Schizophrenia Episode (RAISE) Project, aimed at preventing the long-term disability associated with schizophrenia by intervening at the earliest stages of illness. The RAISE Early Treatment Program (RAISE ETP) will conclude this year. The RAISE Connection Program has successfully integrated a comprehensive early intervention program for schizophrenia and related disorders into an existing medical care system. This implementation study is now evaluating strategies for reducing duration of untreated psychosis among persons with early-stage psychotic illness. When individuals with schizophrenia and bipolar disorder progress to later stages of their illness, they become more likely to develop—and die prematurely—from medical problems such as heart disease, diabetes, cancer, stroke, and pulmonary disease than members of the general population. NIMH-funded research is demonstrating progress advancing the health of people with serious mental illness. NIMH needs to advance this research to large-scale clinical trials aimed at reducing premature mortality with people living with serious mental illness.


Investing in Early Psychosis Prediction and Prevention (EP3)

As many as 100,000 young Americans experience a first episode of psychosis (FEP) each year. The early phase of psychotic illness is a critical opportunity to alter the downward trajectory and social, academic, and vocational challenges associated with serious mental illnesses such as schizophrenia. The timing of treatment is critical; short- and long-term outcomes are better when individuals begin treatment close to the onset of psychosis. Unfortunately, the majority of people with mental illness experience significant delays in seeking care—up to two years in some cases. Such delays result in periods of increased risk for adverse outcomes, including suicides, incarceration, homelessness and in a small number of cases, violence.

NIMH-funded research has focused on the prodrome, the high-risk period preceding the onset of the first psychotic episode of schizophrenia. Through the North American Prodrome Longitudinal Study (NAPLS) and other studies focused on early prediction and prevention of psychosis, NIMH has launched the Early Psychosis Prediction and Prevention (EP3) initiative. EP3 is showing promise in detecting risk states for psychotic disorders and reducing the duration of untreated psychosis in adolescents that have experienced FEP.

Advancing Precision Medicine

NAMI supports efforts at NIMH to translate basic research findings on brain function into more person-centered and multifaceted diagnoses and treatments for mental disorders. The Research Domain Criteria (RDoC) is showing promise toward efforts to build a classification system based more on underlying biological and basic behavioral mechanisms than on symptoms. Through continued development, RDoC should begin to give us the precision currently lacking with traditional diagnostic approaches to mental disorders.

Funding for Programs at SAMHSA’s Center for Mental Health Services (CMHS)

As noted above, the costs of untreated mental illness to our nation are enormous – as high as $300 billion when taking into account lost wages and productivity and other indirect costs. These costs are compounded by the fact that across the nation states and localities devote enormous resources addressing the human and financial costs of untreated mental illness through law enforcement, corrections, homeless shelters and emergency medical services. This phenomenon of “spending money in all the wrong places” is tragic given that we have a vast array of proven evidence-based interventions that we know work such as assertive community treatment (ACT), supported employment, family psycho-education and supportive housing.

NAMI supports programs at the Center for Mental Health Services (CMHS) at SAMHSA that are focused on replication and expansion of these evidence-based practices that serve children and adults living with serious mental illness. The most important of these programs is the Mental Health Block Grant (MHBG). NAMI is extremely grateful for the $50 million increase for the MHBG that this Subcommittee enacted for FY 2016, boosting funding to $532.57 million.

NAMI strongly supports the doubling of the 5% set aside in the in the MHBG to 10% for early intervention in psychosis. As noted above, the NIMH RAISE study validated the most effective approaches for providing coordinated care for adolescents experiencing FEP. Among these is Coordinated Specialty Care (CSC), a collaborative, recovery-oriented approach that emulates the assertive community treatment approach, combining evidence-based services into an effective, coordinated package. CSC emphasizes shared decision-making―which NAMI strongly supports―with the recipient of services taking an active role in determining treatment preferences and recovery goals.

In 2014, CMHS issued guidance to the states specifying that funding as part of this set aside must be used for those who have developed the symptoms of early serious mental illness, not for “preventive intervention for those at high risk of serious mental illness.” NAMI supports this guidance and we recommend that the Subcommittee continue this 10% set aside for FEP in FY 2017 and beyond. It is critically important for Congress to continue supporting the replication of evidence-based FEP programs in all 50 states. In addition to the MHBG set-aside, NAMI also supports the President’s request for a new $115 million state formula grant program for evidence-based early intervention in serious mental illness.


NAMI also recommends the following priorities for CMHS for FY 2017:

Early Mortality and Serious Mental Illness, Integrating Primary and Behavioral Health Care

The CMHS Primary Behavioral Health Care Integration (PBHCI) program supports community behavioral health and primary care organizations that partner to provide essential primary care services to adults with serious mental illnesses. Because of this program, more than 33,000 people with serious mental illnesses and substance use disorders are screened and treated at 126 grantee sites for diabetes, heart disease, and other common and deadly illnesses in an effort to stem the alarming early mortality rate from these health conditions in this population. NAMI urges the Subcommittee to reject the President’s proposal to cut this program by $23.8 million in FY 2017 and fund the PBHCI at $50 million.


Addressing the Needs of Homeless Individuals Living with Serious Mental Illness

NAMI recommends allocating $100 million for services in permanent supportive housing at CMHS. Years of reliable data and research demonstrate that the most successful intervention to solve chronic homelessness is linking housing to appropriate support services. Current SAMHSA investments in homeless programs are highly effective and cost-efficient. However, funding for SAMHSA homeless programs has remained flat for the past four years, often making it difficult for communities to increase the number of homeless households they are serving with the service dollars. As communities are investing additional housing resources into serving high-need homeless populations, Congress should increase investments in services to help those populations address their long-term health related issues.


For the Projects for Assistance in Transition from Homelessness (PATH) program, NAMI recommends $75 million for FY 2017. PATH provides funding for essential outreach to homeless people with serious mental illness and helps them navigate both the homeless and mainstream services systems to get the services they need. PATH-supported programs served over 185,000 people through outreach in fiscal year 2014. Of these, 28% were unsheltered at the time they started receiving PATH services. 64% needed mental health services and 52% had co-occurring substance use disorders. NAMI also recommends an allocation of $10 million from PATH to a demonstration program to create permanent statewide coordination capacity for the SSI/SSDI Outreach, Access and Recovery (SOAR) program. Finally, NAMI urges an allocation of $100 million, the fully authorized level, for services for people experiencing homelessness within the Programs of Regional and National Significance (PRNS) accounts of both SAMHSA’s Center for Mental Health Services and Center for Substance Abuse Treatment.


Chairman Cole, thank you for the opportunity to share NAMI's views on the Labor-HHS-Education Subcommittee’s FY 2017 bill. NAMI's members across the country thank you for your leadership on these important national priorities.

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