Mental Illness Funding Under Fire

What is “mental illness”?

The question strikes at the heart of a rapidly growing debate within the mental health community over spending priorities at the National Institute of Mental Health, the federal government’s premier research facility on the subject.

Some critics argue that NIMH, part of the National Institutes of Health, should focus largely on the severest diseases, such as schizophrenia, bipolar disorder and major depression.

Other experts insist that its resources also should go to studying such conditions as learning disabilities and Alzheimer’s disease--with an emphasis on basic science of the brain--as well as behavioral disorders. As prime examples of the latter, they cite smoking addiction, school violence and risky sexual practices that contribute to AIDS transmission.

Defining Mental Illness at Heart of Conflict

The controversy has provoked a sometimes contentious split within the mental health community, which otherwise has achieved a remarkable unanimity in recent years with its efforts to reduce the stigmas associated with mental illness and to achieve insurance parity with other diseases.

At stake are not only millions of mental health research dollars but quite likely the very direction such research will take in the future.

Advocates for the mentally ill fear that the divisions provoked by the bickering will only hurt the overall effort to help people suffering from mental disorders across a broad spectrum.

“Federal agencies exist to serve everyone in American society--not a select few,” said Michael M. Faenza, president of the National Mental Health Assn. “Any efforts to narrow the focus of NIMH will have a negative effect on public health.”

The controversy erupted after the National Alliance for the Mentally Ill, a prominent advocacy organization for individuals with severe mental illnesses, attacked the institute in a report last month, charging that it has failed to focus on “severe” mental illness afflicting an estimated 5.6 million Americans and that it has pursued studies in areas the alliance deemed “not mental illnesses at all.”

The alliance faulted the agency for devoting only about one-third of its research budget to basic studies on such illnesses as schizophrenia, bipolar disorder and severe depression--about $152 million--and only about 12% to treatment-related research on those diseases.

But NIMH, using a broader interpretation, said that most of its work has an effect on severe mental illness and described the alliance’s scope as too narrow.

The alliance also chided the institute for using the rest of its funding to study areas the group said are better suited to other institutes, including basic science of the brain. Those areas include Alzheimer’s, AIDS and developmental disorders.

The conclusions were based on a review of research grants awarded by the institute during fiscal year 1997.

“We are not saying these aren’t things worth doing, but if NIMH takes on everyone else’s mandate as its own, it will have little left to do what should be its primary job,” said Dr. E. Fuller Torrey, executive director of the Stanley Foundation for Research on Schizophrenia and Bipolar Disorder, a founder of the alliance and an architect of its critical report.

Torrey called the report “the first round” in what he promised will be a lengthy process. He said that he hopes lawmakers will conduct hearings on the issue and that the pressure will remain “until there are major changes at NIMH.”

The alliance said the founders of the mental health institute never envisioned that it would take responsibility for “all aspects of human behavior, and there is no scientific reason to think that it should do so.”

Yet the institute’s research includes “everything from language processing, reading problems and geometrical reasoning to romantic relationships, infant sleep problems, the parentage of Eastern bluebirds, the behavioral endocrinology of prairie voles and social change in Czechoslovakia,” according to the report.

The criticism prompted an impassioned response from the institute.

The agency issued a statement insisting that, by its own calculation, about 80% of its research money, or $351 million, was spent on work “relevant to mental illness or its underlying brain and behavioral science.”

And the institute declared: “We cannot turn our backs on other mental illnesses, which affect larger numbers of Americans, disabling adults and keeping children from learning.”

Without basic scientific research into brain function, which the institute acknowledges is also studied by other institutes, there will not likely be cures for such serious mental illnesses as schizophrenia, it said.

The issue appears to be “how broad a definition of mental health do you want to have,” said Jeffrey Levi, co-director of the Center for Health Services Research and Policy for the George Washington University School of Public Health.

Levi has worked for several AIDS advocacy groups and in the White House AIDS office. “One of the reasons that we do not have a separate AIDS institute at [the National Institutes of Health] is because you want to bring in cross-cutting expertise. There are some aspects of behavioral research that require the very kind of mental health expertise that you find at NIMH and not at the other institutes.”

Torrey said, “If you are looking at the behavioral aspects of cancer of the breast, then the National Cancer Institute should be funding the research.”

Dr. Steven Hyman, director of NIMH, stressed that study grants can be interpreted in many ways, particularly since research often overlaps and can be applied to more than one disorder.

Regardless, Hyman said, he believes the areas criticized by the mental illness alliance belong within the institute’s mission.

Also, Hyman, who was not director in fiscal 1997, pointed out that Congress has asked the institute to look at specific areas--AIDS-risk behaviors and school violence among them.

“I think the American people should be outraged if we didn’t take the problem of school violence very seriously,” he said. “I don’t think metal detectors are going to solve this problem, particularly since a lot of these youngsters have mood disorders, conduct and attention problems.

“People may disagree as to whether a certain piece of research counts. But if we are going to have effective prevention, we better have appropriate identification and therapies.”

Laura Lee Hall, who recently left her job as research director of the alliance to work for Hyman at NIMH, “despite the report, rather than because of it,” said that it is important to be aware of the alliance’s history so its criticisms can be understood.

“The generation of families that started [the alliance] 20 years ago had experienced a great disservice,” Hall said. “They were told, for example, that they were the cause of the schizophrenia in their kids.

NIMH Defends Study of Basic Brain Science

“There was no significant research investment [in severe mental illness], and they were not only fighting the greater world but fighting the mental health system to pay attention to them. They push for those with severe mental illness first because that’s who they are.”

But Hyman noted that there are many more Americans--an estimated 19 million--suffering from depression, most of them not afflicted by the severe illness experienced by the 5.6 million represented by the alliance. And their illness, regardless of its severity, “takes a terrible toll.”

He believes that researching the mildest forms of depression could help prevent it from becoming more serious, he said.

To neglect mild to moderate mood disorders is like “not doing research on chest pain and cholesterol, and focusing only on heart attacks,” he said.

Moreover, understanding gained from basic research into key functions of the brain will almost certainly have broad applications for numerous mental illnesses, he said.

Defending the institute’s work on Alzheimer’s, for example, he points out that it was NIMH-funded researchers who found a specific gene product, APO E-4, that is associated with an increase in behavioral disturbances in patients suffering from the disease.

And the NIMH calls the alliance’s singling out its $60.2 million in 1997 AIDS funding “disingenuous,” since the money was separately provided by Congress through the AIDS office of the National Institutes of Health and could not have been used for other purposes.

“The report is also cruel because it invites divisiveness between the mental illness and AIDS advocacy communities--despite the fact that people with severe and persistent mental illness are among the groups at highest risk for HIV/AIDS,” the institute said.

The dispute is striking in that institute critics seem willing to attack efforts to research other ailments. Typically, patient advocates take pains to lobby only for their own organizations.

“Advocates are supposed to advocate but don’t knock the other groups,” Hyman said.

Levi agreed. “The AIDS community has always been careful to say: We ought to make the pie larger for everyone and not make this a zero-sum game.”

But Torrey insisted: “I don’t think it’s unseemly at all to say that one disease should get more than another. I don’t buy those assumptions. If schizophrenia and bipolar disorder are being grossly underfunded, then we need to say so.”