Infrastructure and Organizational Deficits

THE PROBLEM Currently, there is no institutionalized mechanism or coordination of efforts to develop new treatments for the relief of cancer-related symptoms or for the care of dying patients. There is no group or office at the NIH or NCI with symptom management as a primary responsibility, even though hundreds of thousands of patients are impaired by these symptoms. The lack of such an organizing structure is not difficult to understand: the NIH and NCI have a mandate to cure or to prevent disease. Managing the symptoms of disease has not been an expectation of those who fund the NIH, nor has it been thought of as an important mission of the NIH. At the NCI, as well as throughout the NIH, a disease model is in place that makes organized planning for symptom-related research cumbersome. At the NCI, it is difficult to identify a project officer that has, as his or her primary title, the coordination, promotion, and review of symptom-related and end-of-life research. The focus is, as it should be, the prevention and cure of cancer, but it is yet to be acknowledged that the control of symptoms and amelioration of distress are part of good cancer care and therefore worthy of publicly supported research.

POTENTIAL SOLUTIONS Symptom management will be addressed appropriately only when there is (1) an organizing group within the NIH that has an interest in and dedication to symptom management and care of the dying patient and the resources for action to improve it, and (2) the formation of groups or task forces to plot the types of basic and clinical research that must be done. Such groups have to generate long-range plans that encompass needs for basic, clinical, and health services research efforts. There has been such a task force for basic research in pain sponsored by the NIH, which might be a model for the management of other symptoms. An effort to make “supradisease” linkages among the institutes that address issues of advanced disease and symptom control is needed. For example, there is a need to link cytokine research in AIDS, cancer, and arthritis—all of which might have implications for the management of cachexia, pain, fatigue, cognitive impairment and depression—or the role of opioid receptors common to several symptoms. The research needed for progress in understanding and treating advanced disease and symptom control is multidisciplinary, and program project and multi-institutional funding would be ideal mechanisms to enhance it.

It is reasonable to ask NCI to provide staff officers, organizational structure and resources to deal with advanced disease and symptom control and to give them appropriate titles so that they can be identified by organizations, the public, and the research community.

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