Pennsylvania passes the Down Syndrome Information Act

Governor Corbett & Chloe Kondrich (used with permission of Kurt Kondrich)

Governor Corbett & Chloe Kondrich (used with permission of Kurt Kondrich)

Last week, Pennsylvania joined the growing number of states passing the Down Syndrome Information Act.

In 2012, Massachusetts passed the law. In 2013, Kentucky passed it. And, then, this year, Maryland, Delaware, Louisiana, and now Pennsylvania have passed their versions of the Down Syndrome Information Act.

In Pennsylvania, the Act is referred to as “Chloe’s Law,” after the daughter of Kurt Kondrich, the advocate who steered the legislation through to passage.

Campbell North reported on the law’s passage in the Pittsburgh Post-Gazette.  Dr. Kishore Vellody, medical director of the Down Syndrome Center at Children’s Hospital of Pittsburgh of UPMC, is featured in the article:

“Published data shows that less than half of people felt like their training was accurate in communicating prenatal diagnosis,” he said. “Even in my med school textbooks, a lot of things we learned about Down syndrome was inaccurate because it takes so long to have them updated.”

* * *

“Our goal in medicine is to make sure people receive balanced and accurate information when they make decisions about health care,” Dr. Vellody said. “That’s why we support endeavors to help expectant parents.”

Mark Bradford, executive director of the Lejeune Foundation USA, attended the bill signing with his son. His organization has an excellent write up of the law’s enactment, with helpful links and a photo gallery of the bill signing.

My thanks to Mark for mentioning my assistance at the start of the process. Already this week I’ve been contacted by advocates in two states wanting to get the law passed in their home states. The bipartisan support and overwhelming vote margins passing this Act show that the Down Syndrome Information Act can be passed in any state.

If you are interested in passing this law in your state, feel free to contact me at mleach@downsyndromeprenataltesting.com.

UPDATE: A website styled as addressing misinformation about reproductive health actually misinforms on the purpose of the Down Syndrome Information Act, recently enacted by Pennsylvania and called “Chloe’s Law” there. The Jerome Lejeune Foundation USA provides a much needed reality check explaining:

Chloe’s Law implements the guidelines physicians were supposed to be following but have not done so consistently. This law is a caring law that will improve patient care. That is why it has received the broad, near unanimous bipartisan support it deserves. The Down syndrome community becomes uneasy when it seems certain groups are attempting to supress information on the positive experiences of having a child with Down syndrome. Let’s stand for providing women information, not for denying them information about a condition that remains too often misunderstood – even within the medical community.

UPDATE: Video of the bill signing can be viewed at this link. It runs just under a minute.

Comments

  1. dalepottre says:

    Soooo….What is this Bill? What does it say? I see that it has been passed in several states, but what is its purpose?

    • Links to the actual bills are in each post on each bill. The bill is to require states to provide written information and referral to parent support organization information that healthcare providers must provide to patients when delivering a test result for Down syndrome. It is a matter of common ground that since women undergoing prenatal testing or receiving a postnatal diagnosis are seeking information, then that information should be provided to them. The bill implements professional medical guidelines that call of this balancing information, but has been shown to persistently not followed in practice.

  2. Don Konwinski says:

    My own work with and knowledge of those with Down Syndrome allow me insight enough to know that these individuals are of great importance to this world – perhaps they are more closely aligned to concepts of joy and forgiveness than most of us and have these concepts to teach us.

Trackbacks

  1. […] The National Center for Prenatal and Postnatal Down Syndrome Resources: Complementing the work of DSDN, this organization is a clearinghouse resource of the most up-to-date information regarding Down syndrome. Furthermore and significantly, this organization tirelessly advocates for legislation, state-by-state, requiring accurate information be given with a diagnosis of Down syndrome. For information on the various states that have passed legislation requiring accurate information to accompany a DS diagnosis, and how it has been carried out, read this. […]

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