Tuesday, May 13, 2014

Delaware and Maryland join Massachusetts and Kentucky in enacting laws to provide information with a Down syndrome test result

Last week, Governor O’Malley of Maryland and then Governor Markell of Delaware each signed laws requiring that their state agencies provide accurate, up-to-date information about Down syndrome for parents receiving a test result. They join Massachusetts (2012) and Kentucky (2013) in passing such legislation.

Delaware joins Massachusetts and Kentucky exactly in what is required, passing in substance the exact same laws as passed in those states. So, now in Delaware, Massachusetts, and Kentucky anyone delivering a test result for Down syndrome to parents is required to provide accurate, up-to-date written information and contact information to local Down syndrome support organizations. Delaware hopefully will further join Massachusetts and Kentucky in identifying the same written information and resources to further standardize the way prenatal testing and postnatal diagnoses are administered.

Maryland also passed a law providing information. Compelling testimony was taken during the hearings on the pending legislation:
When Heather Sachs’ daughter was born with Down Syndrome eight years ago, she wasn’t given helpful information or the names of parent groups offering advice and support.
Instead, Sachs tells Maryland lawmakers, she was simply handed a pamphlet, entitled “So You’ve Had a Mongoloid: Now What?”
On the audio of the Senate Finance Committee hearing where she testified, the gasps from lawmakers and attendees are audible.
The Maryland law initially was identical to that of Massachusetts, Kentucky, and Delaware. But, in the sausage-making of public policy, a key change was made. Instead of requiring that physicians and other health care providers deliver accurate, up-to-date information identified by state agencies, health care providers are merely authorized to deliver that information which they may or may not. So, despite the passage of the law, Ms. Sachs’ same OB could ignore the materials identified by the State and still give out the pamphlet “So You’ve Had a Mongoloid: Now What?”
Hopefully, through executive action, Governor O’Malley will require that every prenatal test or postnatal diagnosis paid for in any way through public dollars shall be accompanied with the written resources identified by the State pursuant to the law. And, hopefully, physicians who want to ethically care for their patients will provide the information identified by the State, and not “So You’ve Had a Mongoloid: Now What?”
Regardless, these laws are reason to celebrate. Each is a measure of public policy emphasizing that women need accurate written information when receiving a Down syndrome test result and should be referred to their local Down syndrome parent support organization. Something long called for by professional guidelines, but still to this day, something ignored or not complied with by too many medical professionals.
Congrats Delaware and Maryland: welcome to the club of states trying to ethically care for parents receiving a Down syndrome test result.

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