Lettercase (www.lettercase.org) is pleased to announce that its booklets, "Understanding a Down Syndrome Diagnosis," have been distributed to medical providers nationwide in the largest ever Down syndrome prenatal outreach effort. However, this accomplishment is just the beginning. Additional funding is critical to make booklets available to the more than 60,000 professionals who could be sharing the unexpected and often overwhelming news with expectant parents.
The National Down Syndrome Society (NDSS) and the Kennedy Foundation generously funded the 10,000 booklet distribution for a prenatal outreach effort that Lettercase arranged with the National Society of Genetic Counselors (NSGC), the American College of Medical Genetics (ACMG), graduate programs, and the American College of Obstetricians and Gynecologists (ACOG), but there remain tens of thousands more medical professionals who could benefit from this important resource.
Last week, Gene Security Network announced a 2 million dollar grant from the National Institutes of Health (NIH) to conduct a clinical trial for non-invasive prenatal diagnosis (NIPD); however, the Prenatally and Postnatally Diagnosed Awareness Act that passed unanimously in 2008 to provide information about conditions, like Down syndrome, has gone unfunded for the past three years. One testing company has already announced more advanced prenatal blood tests for Down syndrome to be released this fall, meaning more accurate testing will be available without the accompanying information needed to support the patients.
Lettercase CEO, Stephanie Meredith, says, "Our booklets give patients the full scope of Down syndrome with information that has been vetted by both medical and disability experts. It is essential for both the federal government and testing companies who are putting funds toward testing to also invest in credible patient education. It is essential that we establish a model, not only in theory but in practice, for responsible testing as this technology continues to evolve for more and more genetic conditions."
According to Madeleine Will, Director of the NDSS Policy Center in Washington D.C., "current prenatal testing was developed with a 13 million dollar NIH grant in the 1990's; now NIH has granted 2 more million dollars for the next wave of prenatal testing. Yet there has been no matching funding to provide the accurate, up-to date, detailed information about life with Down syndrome that professional recommendations require when delivering a diagnosis. The Lettercase booklets provide that required information about Down syndrome. It is incumbent upon those who fund prenatal testing to also provide funding for this vitally essential educational information; otherwise, prenatal testing does not result in informed decisions but can, and often does, result in discrimination against those with the tested-for condition."
Lettercase is a Georgia non-profit corporation that provides reliable and up-to-date resources and information about genetic conditions, as well as professional and academic training about disabilities. Lettercase can make experts available for interview.