data generated are rarely published or shared with non-industry investigators; data gathering is biased against recording events that may negatively affect approval; and the drugs under investigation are ones expected to generate high profits.
Those individuals in agencies who might fund grants in these areas acknowledge that more needs to be spent but point to a lack of interest within their agencies and a lack of organizational structure that promotes this type of research. They also point to a lack of competitive applications. They emphasize the lack of vocal public advocacy for these topics. There has been little political support for this type of research from the major cancer disease groups, cancer survivors, or scientific and professional organizations (aside from specific topics related to their interests). Issues of end-of-life care and symptom control are detached from the mainstream of perceived urgent research needs and are viewed as of substantially less importance than research focused on cure or prevention.
POTENTIAL SOLUTIONS Packaging may be important. As has been pointed out, end-of-life, palliative care, and symptom control issues are components of the whole enterprise of cancer care, and elements of research in these areas are critical to all cancer patients. The biology of the symptoms of dying shares much with the biology of cancer symptoms throughout the disease spectrum. Research on improving the quality of cancer care in general will benefit those with advanced disease. It is possible that labeling efforts as “end of life” and as “palliative” may unnecessarily restrict funding considerations and enthusiasm for support. This issue is clearly controversial and political and needs substantial discussion. Support for this discussion, perhaps from a private foundation, could move it forward.
Even before a full discussion, there is an immediate need for additional funds earmarked for advanced disease and symptom control research grants and contracts. Thus far, there is very little targeted funding, but in a one-time limited program in 1998 that resulted in a request for applications developed jointly by several groups at the NIH, the response from the research community was enthusiastic (more than 120 applications were received, approximately 20 of which were eventually funded).
Public and private funding agencies and disease advocacy groups must be informed about the needs and opportunities for research in this area, especially the unnecessary suffering that patients with advanced cancer endure because of inadequate care. The same need exists for academic institutions and cancer research organizations. A reasonable and modest investment could be made by a foundation to explore how public advocacy of these research efforts might be improved.