Statement From NAMI Concerning Access to Most Effective Medicines For Schizophrenia

Posted on August 6, 1998

NAMI applauds and supports Representatives Marge Roukema (R-NJ) and Marcy Kaptur (D-OH) for their courageous actions in calling for a bipartisan task force on mental illness that would examine gaps in the current public treatment system and more effectively hold accountable those states and communities that have failed people with serious brain disorders.

Science has continued to outpace the availability of services for people with the severest forms of mental illness, such as schizophrenia, resulting in the majority of these individuals living for years without appropriate treatment. The devastating incident which recently occurred in the halls of Congress is the tragic story of schizophrenia in this country today.

Schizophrenia affects an estimated 2.2 million Americans today, between one and two percent of the adult population. A recent study found that more than half of those with schizophrenia receive substandard care for their illness. In fact, the results of the landmark Schizophrenia Patient Outcomes Research Team (PORT) study found alarming rates of inappropriate dosages of antipsychotic medications, untreated depression and side effects, second-class treatment of African Americans, inadequate family supports, and minimal vocational rehabilitation and community-based treatment programs.

Our hearts go out to the families of the two slain U.S. Capitol Police Officers who were killed in the line of duty. We have the deepest respect for the dedicated service and personal sacrifice these individuals and others in their position make in protecting this country’s lawmakers, their staffs, and visitors to the Nation’s Capitol.

As the nation’s leading grassroots advocacy organization solely dedicated to improving the lives of persons with severe mental illness, we also know the desperation and agony the Russell Weston family is experiencing. We are all too familiar with the heavy burden of care that families must carry in an attempt to ensure their loved ones with severe mental illness get the treatment they critically need.

Never before in our history is there such amazing promise and renewed hope of recovery for people with severe mental illness. While the keys to recovery have been identified, the door to regaining a full and productive life remains locked for millions of Americans suffering from schizophrenia. Remarkable new treatments are readily available. Access is not.

To improve the care and treatment of individuals with severe psychiatric disorders and thereby lessen chances of repeat tragedies such as the Russell Weston shootings in the Capitol, NAMI recommends the formation of a bipartisan task force that would address the gaps in the current health care system.

In particular, the experience of NAMI families has taught us that four critical elements must be in place to effectively address the full spectrum of services needed by our family members who suffer from schizophrenia:

• community-based care including ongoing medical treatment, housing, rehabilitation, and other supports for those who are able to recognize the need for care and manage their own illness;
• assertive community treatment programs that provide outreach and crisis support for those who are less able to maintain their own treatment requirements;
• outpatient treatment order that require participation in treatment as a condition for living in the community for those who do not respond to outreach and resist treatment; and
• involuntary inpatient commitment that provides short-term hospitalization to treat and stabilize acute psychiatric symptoms for those who are unable to recognize their need for treatment due to the symptoms of their illness.

We look forward to continuing our work with members of Congress on this critical initiative.