Getting the Facts on Birth Defects and Cancer in Indiana

Photo courtesy John Winters

Thanks to The Boren Foundation, and Jack and Karen Kay Leonard for making this website possible.

Getting the Facts on Birth Defects and Cancer in Indiana — Overcoming GIGO

Computer geeks long ago coined the term, GIGO —Garbage In Garbage Out. While the Indiana State Department of Health does the best it can with the information and resources it receives for its cancer and birth defects registries (officially called a birth problems registry in Indiana), the GIGO concept is probably at work.

Without comprehensive, accurate data processed and published in a timely manner, Hoosier policymakers, regulators and medical professionals must rely on best estimates and extrapolations of national data. Serious local problems are lost in the GIGO shuffle.

In the 2000 legislative session, Senators Simpson and Gard introduced SB-397 based on months of discussion about cancer and birth defects in Indiana at the Environmental Quality Service Council. The bill would have provided significant funding for the cancer and birth defects registries and would have required reporting of birth defects identified before a child reaches four years old. The bill did not advance during the hectic pace of a short session.

This year, Rep. Crawford introduced HB-1864. The goal of the bill was modest — require that ISDH publish the data from the cancer registry on an annual basis. After testimony from IKE’s Tom Neltner, Rep Crawford introduced an amendment to require:

ISDH, in cooperation with IUPUI’s School of Public Health, to assess the comprehensiveness, accuracy, and timeliness of the birth defects and cancer registries in Indiana.
Reporting to ISDH by healthcare professionals of birth defects noted before the child reaches four years old. Currently, only birth problems and defects noted at birth are reported — via the birth certificate.
The bill, as amended, passed the House by a 96-0 vote, demonstrating bipartisan support for getting sound information on Hoosier health.

However, ISDH estimated that it would cost $1 million in the first year and $650,000 in subsequent years to comply with the law. With Indiana’s tight fiscal circumstances, Rep. Crawford had to withdraw the bill. IKE hopes that the funds can be found to get the facts!