October is National Down Syndrome Awareness Month. In 2015, groups combined in an effort to ensure patients receive accurate information with the delivery of a test result of Down syndrome for their child.
Across the nation, states are passing the Down Syndrome Information Act (DSIA). Here is a run down of the states who have passed it so far:
2012: Massachusetts, Florida
2014: Delaware, Maryland, Louisiana, Pennsylvania, Ohio
2015: Indiana, Illinois, Texas, Minnesota
That makes a dozen so far in just four years.
In Kentucky, the law is already serving a new purpose, which I, for one, hoped for when advocating for its passage in my home state.
One of the critiques of the DSIA is that it is limited to just Down syndrome when there are an ever expanding number of conditions that prenatal testing is detecting. A defense for the DSIA being focused on Down syndrome is that Down syndrome remains in the forefront of prenatal testing, it is one of the most commonly prenatally detected condition, and, unlike rarer conditions, there are professionally recommended patient educational materials.
That said, it does not mean that the DSIA should always be limited to just Down syndrome. For example, Florida’s statute is not limited, but instead establishes an advisory council to identify materials for all conditions. In Kentucky, this expansion to the scope of the DSIA was done by amendment.
In 2015, the Spina Bifida Association of Kentucky (SBAK) led the effort to add spina bifida to the DSIA. So, just as Kentucky health care providers are required to provide materials and referral to local Down syndrome groups with a Down syndrome test result, they will also have to provide materials and referral to SBAK with a spina bifida test result.
In August, the SBAK and the National Center for Prenatal & Postnatal Down Syndrome Resources joined in an effort to facilitate the administration of Kentucky’s DSIA. Through a grant from a local foundation, the National Center was able to provide the materials recommended by the Kentucky Cabinet for Health & Family Services to every practicing obstetrician in the state (over 300). The SBAK, along with local Down syndrome groups from around the state, further helped in funding this distribution and in providing information on their organizations.
This charitable effort was necessary because like almost all DSIAs, Kentucky’s remains unfunded. Therefore, while there is a law on the books requiring the provision of certain information, until this mailing, most providers delivering a test result likely did not have the printed materials to deliver.
It is hoped that through this effort–by providing the materials to every obstetrician in Kentucky–it will result in a change in practice. By making obstetricians aware of these high quality, professionally recommended patient educational materials, they will build into their habit of delivering the test result along with printed materials for their patients to review in the comfort of their home after they have had time to process the unexpected news.
In doing so, Kentucky obstetricians will be providing their patients with the rest of the information recommended to accompany a prenatal or postnatal test result, and they will be complying with the legal requirements of the DSIA.
Links relevant to this post can be found in the on-line version of the op-ed I had published in my local paper about this joint effort to get information to patients by the National Center and SBAK.