Presiding: Dr. Lenore Tate, Senate Health/Human Services, Staff Vice Chair, ASI CFH Committee, California

Speakers: Dr. Nancy C. Lee, Assistant Director for Science, Division of Cancer Prevention and Control Centers for Disease Control and Prevention (CDC), Georgia

Dr. Gilbert H. Friedell, Director for Cancer Control, Kentucky Cancer Registry, Kentucky

Representative Mary Lou Marzian, Kentucky

More than 1.2 million cancer cases will be diagnosed in the U.S. this year and more than 560,000 Americans will die of the disease. Access to information about cancer is critical to state legislators in developing health policy.

Dr. Lee began the session by explaining that a cancer registry is the principle method of gathering cancer data for a specific area. The area could be a hospital, metropolitan area or state. Cancer registries provide information needed to plan and do research on cancer prevention and control activities. Lee defined cancer incidence as the number of new cases of cancer per year and cancer mortality as the number of persons dying of cancer per year.

Dr. Lee provided examples of how cancer data has been used. For example, it can be used to:

• Target specific geographical areas for breast, colorectal and cervical cancer screenings
• Examine racial and other socioeconomic differences in incidence and treatment of cancer
• Identify potential cancer clusters
• Evaluate the effect of family history on risk for breast and ovarian cancer

National cancer incidence data is currently available from the National Cancer Institutes' Surveillance, Epidemiology and End Results (SEER) program. While reliable, the data is limited to five states and five metro areas--representing only about 14 percent of the nation. Data is available for blacks and whites, but not for Asians, Latinos or Native Americans because of the low sample of these populations in the areas represented in SEER data. Mortality data is retrieved from state vital statistic information, taken from death certificates. Hence, information is available on cancer deaths; little or no information is available on cancer causes. Limited resources restrict data collection on all cancer cases. Moreover, most data is gathered at large hospitals even though many diagnoses are made elsewhere. Lee stressed the need for reliable and consistent state and national data.

In concluding her presentation, Lee provided an overview of the Centers for Disease Control and Prevention's National Program of Cancer Registries. The program, when fully operational will collect and standardize cancer incidence data on 97 percent of the U.S. population. This will make it possible to perform regional analyses to determine risk factors or environmental exposures. In 1997, CDC helped 45 states, three territories and the District of Columbia with cancer registries: 37 enhanced established registries and 12 developed new registries. With fiscal year 1998 appropriations of $24.2 million, CDC will continue to support these programs.

Dr. Friedell described the establishment of the Kentucky Cancer Registry at the University of Kentucky and how the state health department and the registry work together. All of the large hospitals in the state operate a registry. The state registry provides computer software (free-of-charge) to the hospitals to make the data uniform. In addition, the state registry gathers information from smaller hospitals and other locations that diagnose and treat cancer and combines it with the data from hospital registries. This provides a complete picture of cancer incidence in Kentucky.

Representative Mary Lou Marzian concluded the session by expressing her appreciation of the Kentucky Cancer Registry and the information it provides to the legislature. Representative Marzian said that the registry is available at a web site accessible from computers on each member's desk at the capitol. Lawmakers can click on the counties they represent and get cancer statistics and locate areas with high incidence and increase cancer control activities accordingly. For example, an area of rural Kentucky was identified where the cervical cancer rate was unusually high and the Pap test rates very low. Cervical cancer is relatively inexpensive to treat if detected early, hence education and screening efforts pay off. The area was targeted for increased screening services and education on the need for regular Pap tests.

Handouts: (available free to legislators and legislative staff)

• LegisBrief, "Fighting Cancer: The Role of State Registries"
• "What Providers Should Know about Community Cancer Control"
• Cancer Facts and Figures 1998
• CDC At-A-Glance, "The National Program of Cancer Registries"
• Public Law 102-515--October 24, 1992