Senator Doug Jones
The bill would curtail the “diagnostic odyssey” children with rare diseases endure, which lasts 5-7 years on average
WASHINGTON DC– U.S. Senator Doug Jones (D-Ala.) has 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 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.
“Whole Genome Sequencing has been a groundbreaking development for Americans with undiagnosed conditions and rare diseases. Expanding children’s access to these services will save lives and provide hope to families through improved diagnostic and treatment options. In Alabama, UAB and HudsonAlpha are leading the way to help bring these life-saving services to families,” Senator Jones said.
There are approximately 7,000 rare diseases known today. Approximately 80 percent of rare diseases are genetic, and about one-half of all rare diseases affect children.
The legislation is cosponsored by Senators Susan Collins (R-Maine), Martha McSally (R-Ariz.), and Bob Menendez (D-N.J.). 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.
Since being elected to the Senate in 2017, Senator Jones has made improving access to health care in Alabama one of his top priorities. He has taken a number of actions to make quality, affordable health care more accessible, including:
- Introducing legislation to incentivize Alabama to expand Medicaid;
- Successfully making the case to the Centers for Medicare and Medicaid Services to change the unfair Medicare wage index which disproportionately hurts Alabama’s financially strained hospitals;
- Introducing a bipartisan bill to address the nursing shortage in rural areas;
- Introducing legislation to ensure women can access affordable health care coverage during and after pregnancy;
- Introducing a bill to stop the maternal mortality crisis for black women.
Click here to read the text of the bill.
Media Release/Caroline Stonecipher/Office of Alabama Senator Doug Jones
