Legislation to Help Diagnose Children with Rare Diseases Introduced - Healing Genes

Legislation to Help Diagnose Children with Rare Diseases Introduced

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Washington, D.C.—U.S. Senators Susan Collins (R-ME), Doug Jones (D-AL), Martha McSally (R-AZ), and Bob Menendez (D-NJ) introduced bipartisan legislation to help thousands of children with rare diseases receive a diagnosis and proper treatment more quickly.

Children with rare diseases face a “diagnostic odyssey” that typically lasts five to seven years and entails seeing an average of seven different physicians. Tragically, 30 percent of these children do not survive beyond the age of five years old.

The Ending the Diagnostic Odyssey Act would help provide relief to these children and their parents by allowing states to conduct Whole Genome Sequencing (WGS) services for children on Medicaid with a disease suspected to have a genetic cause. Under the three-year pilot program, the federal medical assistance percentage (FMAP) would be 75 percent. WGS is the most robust genetic test available and the only test that can detect nearly all types of genetic variants.

“For parents of children with an undiagnosed illness, answers cannot come soon enough. 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,” said Senator Collins. “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.”

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