Florida passes the Down Syndrome Information Act

Joining the growing list of states that have passed the Down Syndrome Information Act, Florida did so before every other state but Massachusetts. 

Massachusetts led the way in being the first state to pass the Down Syndrome Information Act. But, then, later that same year, Florida joined Massachusetts in passing it’s version of the act. Here are the key differences from the Massachusetts act (which has been passed essentially unchanged in states like Kentucky and Delaware).

1. Limited to prenatal test results

Unlike every other version of the law, Florida only is concerned with a prenatal test result. While more and more women will be told prenatally, there remain many parents who receive the news after the birth of their child and still are provided no other information. Florida’s law, if followed by practitioners may change the culture so that doctors develop the habit of providing written resources with each diagnosis, but the Florida law does not require doctors to do so after the baby is born.

2. Not Down syndrome specific

Unlike the other versions of the Down Syndrome Information Act, Florida’s law is not limited to Down syndrome. Though Down syndrome is mentioned, the law requires information to be provided when a healthcare professional delivers a test result for any condition defined (by another statute) as a “developmental disability.”

This change addresses a common question about the Down Syndrome Information Act: why only Down syndrome? The common response is that there are resources recognized by professional medical organizations about Down syndrome, but not for many others. As a result, the law demands something that is currently not feasible because there are not resources that physicians can provide with confidence that they are accurate and not skewed one way or the other in the presentation on the condition. Florida addresses this with the final distinction:

3. Establishment of advisory panel

Instead of delineating characteristics necessary for the information to be distributed by the state as other versions of the law did, Florida instead empaneled an advisory panel to select the materials. The panel members are restricted to being health care professionals or caregivers who deliver health care services. All  are political appointees by the Governor, the President of the Senate, and the Speaker of the House of Representatives.

How has the law done in 3 years?

Being the second version of the Down Syndrome Information Act that was passed, let’s see how it’s being implemented as it concerns Down syndrome.

The law requires the state Department of Health to make the materials available via its website. Here’s the screen shot from the webpage concerning Down syndrome:

The law was passed in 2012, a year before the American College of Medical Genetics & Genomics (ACMG) issued its statement on non-invasive prenatal screening. But, as currently presented, the Florida website only recognizes one of the three resources identified by the ACMG for expectant mothers to receive following a NIPS result. Hopefully, the website will be updated to be consistent with the most current statement on the newest form of prenatal testing and Florida will add Lettercase’s Understanding a Down syndrome Diagnosis, and the American Academy of Pediatrics healthcare guidelines for Down syndrome. To its credit, it does include the prenatal screening and testing pamphlet published by Lettercase in 2013.

The Florida Birth Defects Registry and Down syndrome

And should Florida update its website, then, maybe Florida will also revise the report issued by the state-sponsored Florida Birth Defects Registry (FBDR) and what it says about Down syndrome.

Here’s how the FBDR’s most recent report describes Down syndrome:

This is exactly the medically-skewed presentation that leaves so many women without hope when the diagnosis is given to them. Only medical complications, with even the first line causing the reader to wonder if those with Down syndrome are even “human” since “Humans usually have 23 pairs of chromosomes” but those with Down syndrome don’t fit this criteria.

Perhaps even worse is what is shared at the end of the report:

The focus of the FBDR report is on preventing birth defects. And for those that can be prevented, like folic-acid supplementation for open neural tube defects and alcohol abstinence to prevent Fetal Alcohol Syndrome, this is a worthy public aim. But, why mention the claimed “costs” of lives with Down syndrome? I would be very concerned if this information was cited in public policy discussions to justify Florida’s Medicaid paying for prenatal testing for Down syndrome.

Florida & Down syndrome information

Florida brings the total number of states with versions of the Down Syndrome Information Act to eight. Through the advisory council established by Florida’s law, hopefully they will recommend updating the Department of Health’s website to be consistent with professional guidelines and the FBDR will be revised in later reports to be more accurate and balanced without a claimed “cost” for a life with Down syndrome being cited.

This post was prompted by a reader notifying me of Florida’s version of the Down Syndrome Information Act. If you have information relevant to this blog, e-mail me at mleach@downsyndromeprenataltesting.com.