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Senator Doug Jones Introduces Bipartisan Legislation to Help Children with Rare Diseases

Washington,
D.C.

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.

 

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