From Sharon Terry at the Genetic Alliance:
Please join me in supporting bipartisan legislation introduced last month by Rep. Peters (CA) and Rep. Shimkus (IL). The bill is H.R.4144, the “Ending the Diagnostic Odyssey Act.” Here are some FAQs about the legislation, and here is a press release from the bill sponsors.
This legislation would allow states to conduct a three-year pilot program to increase the Federal Medical Assistance Percentage (FMAP) rate to provide Whole Genome Sequencing clinical services for children on Medicaid with a disease that is suspected to have a genetic cause. I also wanted to share a blog post from Francis Collins on the power of Whole Genome Sequencing for this population, and a post from Rady Children’s in San Diego in response to a similar state effort called, “Project Baby Bear.”
A family’s income should not be a barrier to accessing this powerful diagnostic tool, so I am asking others to demonstrate support for this effort. If your organization would like to sign onto the letter, or use it as a template, please email Vilma Whittier by Friday, September 27th. Let’s make a difference for all those kids who need this now.