Two in five Iowans will be diagnosed with cancer in their lifetimes. In 2020, we expect 18,700 new cancers will be diagnosed among Iowa residents, and an estimated 6,400 Iowans will die from cancer, 17 times the annual number caused by auto fatalities. Cancer surpassed heart disease as the leading cause of death in Iowa in 2007, accounting for about a quarter of all causes of death. Cancer is a major burden in Iowa and throughout the US. Because of the critical need for data, cancer is a reportable disease in all 50 states, although Iowa is one of only a few states that do not currently provide penalties for facilities that do not report.
Statewide cancer incidence data are available due to the existence of the Iowa Cancer Registry (ICR). Since 1973, the ICR has been a member of the National Cancer Institute’s prestigious Surveillance, Epidemiology and End Results (NCI SEER) Program. Iowa represents rural agricultural and Midwestern populations and provides data included in many national NCI publications. The goals of the ICR include: 1) collecting data on each Iowan diagnosed with cancer and reporting these de-identified 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; 4) promoting and conducting research studies designed to assist with cancer prevention and control; and 5) maintaining and protecting the confidentiality of patient, physician and hospital data. A follow-up program tracks more than 99% of the cancer survivors diagnosed since 1973.
The existence of the ICR allows for the study of the cancer experience of Iowans and focuses national attention and research dollars on this issue. The ICR is funded primarily through a contract with the NCI, but the contract requires a portion of the funding for the ICR be obtained from non-federal sources such as the state of Iowa. Currently, for every dollar the state of Iowa invests in the ICR, approximately, $30.25 of federal funds are returned to Iowa through the NCI SEER contract. Additionally, the presence of the ICR 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 Prevention, 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 ICR. Furthermore, The ICR provides numerous educational and experiential opportunities for University of Iowa students.
The ICR also serves as the source of data for 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. ICR data are useful in guiding the planning and evaluation of cancer control programs (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 state of Iowa appropriation is used to help meet the NCI’s cost-sharing requirement by supplementing core support for the ICR, including salaries, computer services, equipment and general expenses. Additionally, funds are used to support the preparation and dissemination of Cancer in Iowa, an annual report on the status of cancer, and development and dissemination of information regarding the ICR via the internet, SEER*Stat, and other reporting mechanisms. Since 2003, annual funding from the state has been reduced by approximately $53,250, or approximately 1 FTE. Funds received through the state of Iowa appropriation are essential for maintaining NCI contract funding and for meeting the NCI contractual requirements of timeliness, completeness and quality of reportable data.