“(A) encouraging the expansion of health insurance coverage of genetic and genomic testing, including diagnostic, predictive, and pre-symptomatic testing, and whole genome sequencing;

(B) supporting the collection of evidence for the clinical utility and appropriate use of genetic and genomic tests;

(C) improving access to genetic counselors, pathologists, and other relevant professionals, including strengthening related workforce education and training efforts;…”

Bill, page 2.

The Bill also requires a report on how coverage provisions in the Medicare and Medicaid programs may restrain the use of genetic testing to improve outcomes for beneficiaries including especially individuals suffering from rare or orphan diseases and individuals in special populations, such as infants, children and the critically ill. The report should include recommendations on how the Centers from Medicare & Medicaid Services can make better determinations to support the use of precision medicine. Bill, pages 2 and 3.

State Option to Provide Whole Genome Sequencing for Certain Children

The Bill allows states to apply for “an exception to the federal medical assistance percentage” to provide qualified children on Medicaid (e.g., those suspected of suffering from a genetic disease) with access to whole genome sequencing. (See February 15, 2018 Swalwell press release.) As a first step, states may apply for a grant to assist them in developing a plan to implement clinical access. Bill, page 6.

Another Step Forward

The Bill, if passed by Congress and signed into law by the President, will further advance the purpose of the 21^st Century Cures Act, which authorized funding and allocated resources to advance personalized medicine. The Bill is supported by the Personalized Medicine Coalition, the EveryLife Foundation for Rare Diseases, Biocom, the Advanced Medical Technology Association, and the American Association for Cancer Research. (See February 15, 2018 Swalwell press release).