Panel Expected To Recommend Increased Testing for Rare Diseases in Newborns
The Wall Street Journal on Friday examined actions by several states to expand the number of "rare but devastating diseases" for which they test infants, following calls from "a growing number" of doctors, parents and health officials to conform with an anticipated national infant testing standard. Health advocates are concerned that some states are not performing "relatively inexpensive tests" for many diseases in newborns "despite emerging evidence that the tests can save lives and prevent illnesses that can disable children for life," the Journal reports. Researchers from the American College of Medical Genetics in late September will present HHS Secretary Tommy Thompson with a report that is expected to recommend that every state be required to test infants for no less than 30 genetic diseases. The panel also is expected to recommend that the government provide states with funds and grants to:
- Implement a new disease-detection technology called tandem mass spectrometry;
- Hire and train staff to conduct the tests;
- Counsel parents of children with diseases; and
- Educate prospective parents about the availability of the tests.
The expected recommendations are "already putting pressure on states to act," the Journal reports. California this week passed a law that increases the number of disorders it will test to 41 from four; Missouri last month announced it will expand the number of diseases tested to 25 from five; and New York state has agreed to triple the number of diseases for which it tests. In addition, Georgia could soon increase testing to the recommended 30 illnesses from nine, according to Paul Fernhoff, chair of Georgia's newborn screening advisory task force and an Emory University professor (Waldholz, Wall Street Journal, 7/30).This is part of the California Healthline Daily Edition, a summary of health policy coverage from major news organizations. Sign up for an email subscription.