Nation at Crossroads of Success or Failure, Declare Advocates for the Mentally Ill

Jul 17 1998

Washington, D.C. - More than 2,400 members of the National Alliance for the Mentally Ill (NAMI) are converging in Washington this week at the organization’s annual convention to address the inequities and outdated polices still imposed on people with severe mental illness. While millions of Americans who suffer from once crippling brain disorders are experiencing new found freedom and independence as a result of remarkable breakthrough medications, the majority are still imprisoned by stigma and discrimination resulting from imperfect laws and inadequate protections.

In keeping with the convention’s theme, From Discovery to Recovery, federal policymakers and leading medical experts will lead discussions on the latest research findings, treatments and policies governing the lives of people with schizophrenia, bipolar disorder (manic-depressive illness), major depression, obsessive-compulsive disorder, and severe anxiety disorders.

Taking its message of inequity directly to Congress, some 2,000 NAMI members met with their federal lawmakers to urge them to eliminate the two-tiered system that exists today for people with severe mental illness. NAMI families and consumers called on Congress to address how shifts in the health care system are impacting the people with the most severe forms of mental illness. In particular, lawmakers were asked to curb abuses by managed care plans that unnecessarily restrict access to the newest, most promising treatments in the name of cost-cutting.

“We are at the crossroads of success or failure,” said NAMI Executive Director Laurie Flynn. “Never before in the history of our movement is there such amazing promise and renewed hope of recovery for people with severe mental illness.”

“Our nation, unfortunately, has not kept pace with science,” said Flynn. “While research has propelled us forward and allowed thousands with brain disorders to reclaim productive lives, far too many remain on the margins – held in bondage from decades-old stigma and discrimination.

“Real recovery is within the grasp of millions of people with severe mental illness,” said Flynn. “In fact, the treatment success rates for schizophrenia, bipolar disorder and major depression far exceed those for other chronic physical diseases such as heart disease, cancer and diabetes. While the quality of life and potential for success for people with severe mental illness are vastly improved, current health and economic protections fall woefully short.

“The two-tiered system in this country must be eliminated,” said Flynn. “We would not relegate people with heart disease, cancer or diabetes to ‘second class’ status. Why, then, don’t we accept people with biologically based brain disorders as ‘full class’ Americans?

“While the keys to recovery have been identified, the door to regaining a full and productive life remains locked for millions of Americans with severe mental illness,” said Flynn. “Remarkable new treatments are readily available. Access is not.”

For example, a new generation of breakthrough medications – such as atypical antipsychotics and advanced antidepressants – are allowing people with severe mental illness to reclaim full lives without the devastating side effects produced by the older drugs. However, many people – oftentimes those with the most severe disabilities – are not receiving these life-saving medications. In fact, more than half of those suffering from schizophrenia today receive substandard care for their illness. The results of the landmark Schizophrenia Patient Outcomes Research Team (PORT) study released earlier this year 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.

A new era in health insurance was ushered in January of this year with the implementation of the Mental Health Parity Act of 1996, which marked a major step forward in ending insurance coverage discrimination. While the law represents a good first step, it does not provide full protections and is riddled with many loopholes for businesses to exempt themselves from the law. The momentum has since shifted to the states, with a firestorm of legislative activity creating a patchwork quilt of various parity laws around the country. A total of 19 states now have some degree of mental health parity, with fairness bills pending in many other state legislatures.

While such parity laws are a good beginning, the proliferation of managed care organizations (MCOs) are leaving many people with severe mental illness with little or no coverage since most plans offer discriminatory treatment and out-of-pocket limits for serious brain disorders. Faced with mounting insurance costs, the majority of American employers are choosing to administer coverage of serious brain disorders through managed care.

Concerned with the effects of managed care on people with severe mental illness, NAMI released its Managed Care Report Card late last year on the performance of the nine largest managed behavioral health care companies, grading them on such important measures as: access to hospital inpatient treatment and newer medications, adoption of advanced treatment guidelines for schizophrenia, and meaningful family and consumer input. While some of the companies met the criteria on several measures, the overall industry was given a failing grade.

In addition to the many barriers in the nation’s health care system, people with severe mental illness still face tremendous challenges in gaining access to decent, safe affordable housing, and educational and employment opportunities.