Lab Matters Spring 2019 - Page 10

FEATURE got bills introduced that would essentially require the state to screen for all LSDs on the RUSP by 2020—an impossible feat. (By way of comparison, Wadsworth screened tens of thousands of infants for Pompe, a LSD, during its pilot program, before the disorder was added to routine NBS.) Piper, who participated in an analysis of the bill, said the health department concluded that there was “no way we could add these conditions to our panel by next January.” She said, “We don’t have the physical capacity and infrastructure to screen for LSDs on a population level. We would require additional equipment, more electrical resources, more data resources. It would take a capital outlay that is not insignificant.” Declining to appropriate the funding, the legislature backed down. As of early spring, it seems likely the final bill will instead ask IDPH to review every new condition added to the RUSP—which it already does—and then submit a report to the governor’s office. “We dodged a bullet,” said Piper. Most states—all except, FL, KS, NY, PA and DC—fund their NBS programs at least in part through fees, ranging from $30/infant in Louisiana to $162.98/infant in Rhode Island. But increasing these fees is rarely easy. After Missouri added screening for Pompe disease and other select LSDs in 2013 (an effort costing a few hundred thousand dollars), it took two years to raise the statutory cap on NBS fees so the state could charge an extra $20/baby—an adjustment requiring the approval of both the state legislature and governor. Given budgetary constraints, NBS laboratories continually work to increase efficiency. New York’s Wadsworth Center has implemented “lean” methods to streamline its processes. Recent improvements include using state health department systems to enhance electronic communications with hospital newborn coordinators, and tweaking laboratory systems to assure more timely data entry. “We save two babies every three days” What does the future hold for NBS? The experts cited in this article predict continued expansion of the NBS panel due to advances in gene therapies that will target more candidate disorders and a greater willingness to screen for conditions whose symptoms can only be attenuated through early intervention. The growing NBS panel, in turn, will require growing the nation’s pipeline of NBS laboratory scientists—for example, through efforts like the APHL NBS fellowship program—and follow-up providers. Currently, Champaigne said, there is one biochemical geneticist for every 2.2 million US residents, and new professionals are added at the rate of only 15 every two years—not enough to replace those retiring from this demanding specialty. On a technical level, multiplexing, whereby several different disorders can be tested simultaneously from the same NBS dried blood spot, is likely to expand, via platforms like mass spectrometry. Preparing DBS samples for testing. Photo: Iowa Department of Health 8 LAB MATTERS Spring 2019 PublicHealthLabs @APHL APHL.org