UTHSC News: Physician Successfully Advocates for ‘Life-Changing’ Law for Critically Ill Infants and Children

Years ago, Terri Finkel, MD, PhD, lobbied before a local government board to block development of a Denver wetland area, after she researched and found a particular species of wildlife there was at risk of extinction. While she describes herself as "not particularly political," she also admits, "when I get passionate about something, I research it to death."

The wetland eventually was developed, but the species was protected. That was her only brush with a government body, until earlier this year when she stood before the Tennessee Legislature armed with her customary copious research and a passion to help seriously ill children.

Dr. Finkel advocated before the state House and Senate for legislation to require TennCare coverage for rapid whole genome sequencing of newborns and children exhibiting signs of rare genetic diseases when certain criteria are met. This, she explained to the lawmakers, would give physicians the power to diagnose babies and children with rare childhood illnesses sooner and eliminate the pain, suffering, and expense resulting from months and possibly years of testing to get a diagnosis.

The legislation passed unanimously and was signed May 28, making Tennessee one of 14 states to have laws for Medicaid coverage for rapid whole genome sequencing. In most of those states, rapid whole genome sequencing is an approved benefit only for infants. Tennessee is one of five states that have the benefit from birth to age 21.

Read more at our UTHSC news site.