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Photo courtesy John Winters Thanks to The Boren Foundation, and Jack and Karen Kay Leonard for making this website possible. |
Setting the Stage for
Indiana’s Birth Defect Registry
Indiana is poised to have an effective birth defects registry thanks to a bill by Rep. Crawford. House Enrolled Act 1864 (Public Law 93) was authored by Rep. Crawford, with Rep. Murphy, and Senators Gard and Breaux serving as cosponsors. The bill passed the House by a vote of 93-0 and the Senate by 49-1.
IKE teamed up with March of Dimes and the Indiana Minority Health Coalition and ARC of Indiana to facilitate adoption of the law. An effective birth defects registry is one of IKE’s priorities. Without comprehensive and accurate information on the nature and extent of birth defects in Indiana, we will continue the practice of extrapolating national trends that may overlook state and local differences. With the information, we can get a better sense whether a folic acid education program is working or whether a community has an unusual cluster of birth defects that may have roots in an environmental threat.
Special thanks also goes to Senators Simpson and Miller. Senator Miller agreed to hear the bill in her Public Health Committee and allowed testimony requesting the amendment be reinstated in a manner that makes funding contingent on the Indiana State Department of Health getting adequate federal funding. At the hearing, insightful fiscal impact questions by Senator Simpson led the committee to ask ISDH to reevaluate the potential impact. A week later, ISDH offered an excellent amendment that was adopted by the committee and the bill’s author.
The bill calls the registry a “birth problems registry” and:
Requires health care providers to report birth defects to ISDH if they are identified before the child’s second birthday. These reports must be provided within 60 days.
Directs ISDH to adopt a rule defining birth defects considering the following three factors:
- Extent to which the condition can be measured or identified;
- Extent to which there is a known intervention for the condition; and
- Significance of the burden imposed on the life of the individual by a condition.
Authorizes ISDH to investigate medical records of health care providers to determine if proper reports are being made.
Requires ISDH to publish an annual report on the both the birth defects registry and the cancer registry.
The key is that ISDH is not required to implement the program until it receives funding. Fortunately, at the hearing, ISDH laid out a strategy to obtain funds and committed to implementing the strategy. Now to work together to get ISDH the funding it needs to set up an active registry that we can rely on.
For information from IKE's previous newsletter on the legislation.