Since the early 1990s, the United States has observed a slow decline in the overall rate of cancer mortality. The President's Cancer Panel, a three-member, presidentially-appointed panel responsible for monitoring progress in the National Cancer Program (NCP), asked a variety of individuals representing special population initiatives, advocacy organizations, and medical associations to offer their perspectives on the significance of this decline. Presentations made showed clearly that benefits in the reduction in mortality have not been shared by all segments of the population nor have they been uniformly distributed across all forms of cancer. Significantly, the basis of these inconsistencies remains the subject of current research as do the appropriate ways to identify "special" populations in which to conduct such research.

"Changes in numbers are complex," noted Dr. Richard Klausner, Director of the National Cancer Institute (NCI). "Mortality and incidence rates have a power that is emotional, political and mathematical..in order to understand them, one must understand the systems in place from which the numbers are derived...better systems are needed to assess the burden of cancer and to improve and expand the type of information collected" and "...to provide a deeper and richer picture of why variations in cancer mortality rates among different populations occur." The NCI has commissioned a task force to address this need said Dr. Klausner and he concluded by suggesting that cancer and its burdens should be used to define populations for study rather than the reverse.

The Panel heard, from many speakers, that national data often do not reflect the true burden of cancer in a particular community, or among a particular population, "leading to a false sense of security." For instance, national smoking rates are lower among Asian Americans; however, local studies show much higher rates among subpopulations, such as Laotians (rates as high as 50 percent) and young Asian American women.

Representatives of several NCI initiatives, including the National Black Leadership Initiative, National Hispanic Leadership Initiative, the Appalachian Leadership Initiative, and a representative of the Native American peoples, testified that much more needs to be done at the community level, involving community leaders to communicate information that is both relevant and perceived as trustworthy by these populations. Noted one speaker, "Knowledge is power in the battle against cancer, particularly when that knowledge may be lifesaving." It was emphasized to the Panel that community initiatives require commitment--continually starting and stopping programs erodes confidence and trust. Translation of current knowledge regarding cancer into community applications requires sustained and consistent efforts at the local and at the national level.

While mortality is declining, cancer incidence continues to rise. Participants recommended that the NCP put more effort into cancer prevention and control, again targeted at the community level. Evidence was presented that most States are still some distance from reaching Healthy People 2000 goals related to cancer prevention and control: goals associated with nutritional habits, weight control, smoking prevalence, and screening practices. Furthermore, these goals do not set targets for all the special populations in this country.

The Panel also heard repeated testimony that tobacco use remains one of the greatest barriers to reducing cancer incidence and mortality in this country. Despite data showing a decline in lung cancer mortality among men, the burden for this disease remains highest among this group. It is also well-known that lung cancer mortality is rising among women. Among teenagers, data presented show a steady rise over the past several years in the use of tobacco products. This is occurring despite the ever increasing body of knowledge regarding the impact of tobacco use on individual health status.

Further, to realize a continued reduction in mortality, the Panel heard that more participation in clinical trials is crucial. How this should be done is the subject of ongoing debate. Despite many efforts to inform the public of the benefits of trial participation, the fraction of adults that enter onto NCI clinical trials was stated to be approximately three percent. Suggestions to increase participation included raising physician awareness about clinical trials, since many patients act on the advice of their physicians; educating consumers about the benefits of trials and empowering them to seek information about participating in trials on their own; involving the leadership of minority organizations, who can assist in improving access to care and counteracting fear, denial, and ignorance; removing structural barriers to clinical trial participation, such as restricted insurance reimbursement; and establishing a better body of evidence to support the merits of clinical trial participation.

An overarching issue raised during the meeting was the need for better coordination of the National Cancer Program as a whole. Many well-informed leaders in the cancer community confessed that with so many "players, it isn't always clear who or what is part of the program." Establishing clear leadership, responsibility and accountability for setting goals and priorities, and coordinating their attainment was again recommended. How to do so remains unclear.

This is not a time to become complacent about cancer. The cancer burden in this country is still staggering--approximately 1.4 million new cases are likely to occur this year alone and over half a million people will die of their disease. Despite recent positive trends, the Panel was reminded that every statistic, every number, is still a person with a family and community that are impacted by this disease. Dr. Harold Freeman, Chair of the Panel, concluded by recognizing that "the Nation still has a very large problem with respect to cancer as it affects all people, and particularly the poor, the underserved, the uninsured, the elderly and minorities."