Swalwell, Peters & Emmer Introduce Bill to Make Genetic and Genomic Testing More Accessible

Washington, DC – Today, Representatives Eric Swalwell (D-CA), Scott Peters (D-CA), and Tom Emmer (R-MN) introduced bipartisan legislation to better diagnose and treat genetic disorders like cancer and rare diseases, particularly in children. This legislation was included in Representatives DeGette and Upton's CURES 2.0, legislation that was introduced today, which would improve how drug treatments and therapies are delivered to patients.

The Precision Medicine Answers for Kids Today Act will help eliminate barriers, such as lack of insurance coverage and the inability to see relevant health professionals, to allow better access to genetic and genomic testing. Nearly 80% of rare diseases are genetic and 70% begin in childhood.

"This much-needed legislation will help provide hope and relief to millions of children living with a mysterious and rare disease," said Rep. Eric Swalwell. "Genetic and genomic testing technology is improving every day, and this bill provides a critical step forward for making these tests more accessible to pediatric patients."

"The diagnosis and treatment process is hard enough for parents and families whose child has an easily-diagnosable illness. However, for those with a child suffering from a mystery-illness—struggling through test after test, hospitalization after hospitalization, with no answers in sight—the undertaking to understand what's wrong and administer care seems like an impossible uphill battle," said Rep. Scott Peters. "Thanks in part to San Diego's cutting-edge research, genetic testing and genome sequencing are crucial tools to help give families answers to what is making their children sick. Our bill will make these tools more accessible and affordable, allowing health professionals to better target treatments and improving children's lives by getting answers sooner, and ending the diagnostic odyssey these families face."

"Genetic and genomic testing options are the future of medicine. Offering this service will help us understand the individual needs of patients and ensure we can provide answers for millions of families with children struggling with unknown illnesses. Making these tests more accessible will save lives, revolutionize our health care industry, and ease the burden on our system through prevention instead of treatment," said Rep. Tom Emmer.

"The Personalized Medicine Coalition is pleased to support Reps. Eric Swalwell's, Scott Peters', and Tom Emmer's bipartisan Precision Medicine Answers for Kids Today Act, which will help children with suspected rare genetic diseases take full advantage of technologies that promise to help diagnose their diseases more efficiently," said Edward Abrahams, President of the Personalized Medicine Coalition.

If passed, the Precision Medicine Answers for Kids Today Act would create a program at the Department of Health and Human Services (HHS) for states to provide coverage for genetic and genomic testing for three years, and to study how this coverage improves the diagnosis of pediatric health conditions. The bill would also require the National Academy of Medicine to develop recommendations on how the federal government can reduce barriers to genetic and genomic testing and would require the Center for Medicare & Medicaid Services (CMS) to study how often genetic and genomic diagnostic testing services are currently covered and reimbursed. Furthermore, it directs CMS to issue guidance to states on how to increase the frequency of coverage for genetic and genomic testing diagnostic services through the Early and Periodic Screening, Diagnostic and Treatment Benefit Program.

This legislation is supported by the Personalized Medicine Coalition, The Assistance Fund, the Children's Hospital of Los Angeles, Invitae, Thermo Fisher Scientific, EveryLife Foundation, Syngap Research Fund, and Debra of America.

###