NEW YORK – US Senators Bob Menendez (D-New Jersey), Doug Jones (D-Alabama), Martha McSally (R-Arizona), and Susan Collins (R-Maine) have introduced legislation in the Senate intended to help children with rare diseases receive testing with whole-genome sequencing in hopes of finding a cause for their conditions.
The legislation, called the Ending the Diagnostic Odyssey Act, would allow states to conduct WGS testing services for children on Medicaid with a disease suspected to have a genetic cause. Under the three-year pilot program, 75 percent of the cost of the testing would be borne by federal medical assistance.Â
"Whole-genome sequencing has been a groundbreaking development for Americans with undiagnosed conditions and rare diseases," Jones said in a statement. "Expanding children's access to these services will save lives and provide hope to families through improved diagnostic and treatment options."
Menendez noted that this model of allowing children on Medicaid to access WGS testing already exists in his state of New Jersey, and that this bill will nationalize it as "an additional tool to get to a diagnosis and hopefully treatment, a little quicker."
The Ending the Diagnostic Odyssey Act is supported by more than 100 patient advocacy organizations, including the Genetic Alliance, the Parent Project Muscular Dystrophy, Tuberous Sclerosis Alliance, Alström Syndrome International, Epilepsy Foundation, and the Asthma and Allergy Foundation of America, Collins' office said.