New Laws: Congress Tables Bill to Make Whole-Genome Sequencing Available to Medicaid Kids

In early August, Representatives Scott Peters (D-CA) and John Shimkus (R-IL) introduced in the US House of Representatives a bill to provide “certain undiagnosed children under the Medicaid program” access to whole-genome sequencing. Here’s a briefing.

The Context

By cost-effectively using DNA to detect thousands of conditions that traditional diagnostics may fail to pinpoint, including neurologic, metabolic and other inherited diseases, whole-genome sequencing can be instrumental in saving lives and ensuring that children receive appropriate treatment as fast as possible. “By quickly pinpointing the cause of rare genetic diseases, doctors can prevent unneeded tests or surgeries, shorten hospital stays and reduce medical costs,” said Stephen Kingsmore, president and CEO of Rady Children’s Institute for Genomic Medicine in San Diego.

The Bill

The so called “Ending the Diagnostic Odyssey Act” amends the Social Security Act to give states the option of providing whole genome clinical services to children in their Medicaid programs with the federal government funding up to 75% of the costs. Eligible recipients include individuals under age 21 (although states can reduce the age threshold to 18, 19 or 20) who are otherwise eligible for Medicaid. Individuals would also be eligible up to age of 26 if they meet certain criteria. “It’s hard enough for parents and families to face an unknown medical future for a young child and they should have access to every available diagnostic tool,” bill co-sponsor Peters said in a statement.

The Prospects of Passage

Being a bi-partisan measure gives the bill a better chance of passing the House. Currently, there’s no companion bill in the Senate but the sponsors are hopeful that there soon will be. “Our hope,” says Peters, “is that this legislation opens the door to find answers to medical mysteries so that all children and families who need it can have access to this life-changing genomic medicine.”