WASHINGTON, D.C. — U.S. Reps. Marc Molinaro (R, NY-19) and Nikki Budzinski (D, IL-13) introduced the Down Syndrome Diagnosis Act, a bipartisan bill to help parents and families navigate a new Down Syndrome diagnosis and ensure their child receives high-quality care. 

The bill builds on Molinaro’s ThinkDIFFERENTLY initiative. 

According to the Centers for Disease Control and Prevention (CDC), Down syndrome is the most common chromosomal disorder in the United States, affecting about 6,000 babies every year. 

Despite its frequency, parents and caretakers are often forced to figure out treatment on their own, and frequently don’t have guidance on the potential cost of these medical expenses. 

Molinaro’s bill will require health insurers to provide a variety of available health care coverage options as well as information on local support providers once they become aware of a Down syndrome diagnosis.  

“Between navigating treatment options and figuring out how you’re going to pay for it, receiving a new diagnosis for your child is scary,” Molinaro said. “No family should have to figure all this out on their own. My bipartisan bill, the Down Syndrome Diagnosis Act, will require health insurers to provide families with the information they need to navigate a Down Syndrome diagnosis and ensure their child receives the highest quality of care.” 

“Despite being the most common chromosomal condition, families still receive limited or incorrect information and resources about their new baby with Down syndrome,” said Cyrus Huncharek, director of policy and advocacy for National Down Syndrome Congress. “The Down Syndrome Diagnosis Act will address this issue by ensuring that insurance plans provide up-to-date, evidence-based, and culturally and linguistically appropriate resources about Down syndrome to families.” 

“The National Down Syndrome Congress has long believed that information is power, and this bill will empower families to make decisions that are in the best interest of their loved one with Down syndrome.” 

The bill has been referred to the House Committee on Energy and Commerce.