In 2018, a projected 6,300 Iowans will die from cancer, 18 times the number caused by auto fatalities. Cancer is a leading cause of death in Iowa, accounting for about a quarter of all causes of death. For the years 1973-2016, over 690,187 cancers were diagnosed among Iowans, with more than 263,973 Iowans having died from cancer. In 2018 alone, we expect 17,800 new cancers will be diagnosed among Iowa residents. These statewide cancer incidence data are available due to the existence of the Iowa Cancer Registry.
Since 1973, the Iowa Cancer Registry has been a member of the National Cancer Institute’s Surveillance, Epidemiology and End Results (NCI SEER) Program. There are only 20 state and regional cancer registries throughout the United States that participate in this prestigious program. Iowa represents rural agricultural and Midwestern populations and provides data included in many NCI publications. The goals of the Registry include: 1) collecting data on each Iowan diagnosed with cancer and reporting these data to the NCI; 2) monitoring annual trends in the incidence of cancer among Iowans and the number of deaths related to cancer; 3) monitoring changes over time in prevalence of cancer, trends in therapy, and survival rates; and 4) promoting and conducting research studies designed to assist with cancer prevention and control. A follow-up program tracks more than 99% of the cancer survivors diagnosed since 1973.
Cancer is a reportable disease as stated in the Iowa Administrative Code, and responsibility for cancer data collection has been entrusted to the Registry. The Iowa Cancer Registry is the best statewide resource for determining the burden of cancer on the Iowa population and assessing trends in the occurrence of cancer over time. Each year the Registry responds to many requests from Iowans for data, analyses, and cancer cluster investigations. Additionally, Registry staff members participate in community outreach efforts designed to provide useful cancer-related education for citizens in Iowa. The Registry functions as a data resource for local, national and international research. The Registry also serves as the source of data for measuring progress with cancer and measuring the cancer burden for the Iowa Cancer Consortium, a cancer prevention and control group that consists of over 150 individuals and partner organizations representing Iowa’s communities. Cancer Registry data are useful in guiding the planning and evaluation of cancer control programs in Iowa (e.g., determining whether prevention, screening and treatment efforts are making a difference). This knowledge helps in setting priorities for the allocation of health resources.
The existence of the Iowa Cancer Registry allows for the study of the cancer experience of Iowans and focuses national attention and research dollars on this issue. The Iowa Registry is funded primarily through a contract with the NCI, but the contract requires a portion of the funding for the Registry be obtained from non-federal sources such as the state of Iowa. Currently, for every dollar the state of Iowa invests in the Iowa Cancer Registry, approximately $28.86 of federal funds are returned to Iowa through the NCI SEER contract. Additionally, the presence of the Registry and its database have helped attract numerous research projects and funds to Iowa from other federal agencies such as the Environmental Protection Agency, the Centers for Disease Control, and the National Institutes of Health; annually several millions of dollars are received from these agencies that are directly attributable to the existence of the Registry.
The state of Iowa appropriation is used to help meet the NCI’s cost-sharing requirement by supplementing core support for the Registry, including salaries, computer services, equipment and general expenses. Additionally, funds are used to support the preparation and dissemination of an annual report on the status of cancer in Iowa, and development and dissemination of information regarding the Registry via the internet, SEER*Stat, and other reporting mechanisms. Since 2003, annual funding from the state has been reduced by approximately $51,190, or approximately 1 FTE. Funds received through the state of Iowa appropriation are critical for maintaining NCI contract funding and for meeting the NCI contractual requirements of timeliness, completeness and quality of reportable data.