Bipartisan legislation recently proposed by U.S. Sen. Susan Collins (R-ME) would enable states to better provide access to whole genome sequencing (WGS) clinical services for certain undiagnosed children under the Medicaid program.
“For parents of children with an undiagnosed illness, answers cannot come soon enough,” Sen. Collins said. “The wait to find a cause, never mind a cure, can be excruciating. Parents try to project a calm and reassuring presence for their child while facing a whirlwind of doctor appointments, hospital visits, and unanswered questions.”
Sen. Collins on June 10 sponsored the Ending the Diagnostic Odyssey Act, S. 2022, with bill cosponsors including U.S. Sen. Mark Kelly (D-AZ). The legislation would establish a three-year pilot program under which the federal medical assistance percentage (FMAP) would be 75 percent for WGS genetic tests, which are the only test that can detect nearly all types of genetic variants, according to Sen. Collins’ office.
“By giving states an incentive to provide whole genome sequencing for eligible children through Medicaid, our bipartisan legislation will ensure that more children and their families can obtain the right diagnosis and treatment from the start,” said the senator.
The bill is supported by more than 100 patient advocacy organizations, including the Genetic Alliance, the Parent Project Muscular Dystrophy, the Tuberous Sclerosis Alliance, the Epilepsy Foundation, and the Asthma and Allergy Foundation of America, among others.