Two in five Iowans will be diagnosed with cancer in their lifetimes. In 2024, we expect 21,000 new cancers will be diagnosed among Iowa residents and an estimated 6,100 Iowans will die from cancer. Cancer accounts for about one-fifth of all causes of death. Much work is needed to decrease the burden of cancer among Iowans. Currently, Iowa ranks #2 in the US for new cases of cancer (incidence) of all cancers combined, is one of only six states in the US with a significant increase in incidence from 2016-2020 and has the highest rate of increase among these six states.

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 in the mortality (deaths) related to cancer; 3) monitoring changes over time in prevalence of cancer, trends and impact of therapy, and survival rates; 4) promoting and supporting 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, $32.91 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 National Institutes of Health and the Centers for Disease Control and Prevention. 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 cancer burden for the Iowa Cancer Consortium, a cancer prevention and control group responsible for the implementation of the Iowa Cancer Plan and whose membership consists of over 600 individuals and partner organizations representing Iowa’s communities. ICR data are useful in guiding the planning and evaluation of cancer control programs, including those administered by the Iowa Department of Health and Human Services (e.g., evaluating the impact of prevention, screening and treatment efforts, identifying geographic areas in Iowa with greater risk of cancer or cancer deaths). In addition, the ICR also provides data, reports, and resources to assist hospitals throughout the state with planning and quality improvement efforts. The ICR also provides data collection support to rural cancer centers so they can obtain Commission on Cancer accreditation.

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, a widely disseminated annual report on the status of cancer, and development and dissemination of cancer-related information 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 cancer data.