An advisory committee to the federal government has promised to lead an effort to create national standards for newborn screening in hospitals around the country, but the group failed last week to recommend specific ways to eliminate delays in this critical testing and instead reaffirmed screening guidelines that too often aren’t followed.
We think it’s time for the Joint Commission to get involved. The commission sets patient care standards and accredits hospitals that seek reimbursement from the Centers for Medicare and Medicaid Services. Newborn screening standards established under the Joint Commission would create a strong incentive for hospitals to follow an appropriate protocol for newborn tests.
A Milwaukee Journal Sentinel investigation last year found that thousands of hospitals failed to send newborn blood samples for testing in a timely manner, sometimes with tragic results. For a variety of reasons, the samples are often delayed, the newspaper found. The results of such delays can be catastrophic.
About one in 800 babies is born with a condition potentially so severe that it can cause lifelong disability or even death if not treated promptly.
Last week, the advisory committee to the U.S. secretary of health and human services reaffirmed guidelines put in place in 2005. That’s fine, but those guidelines aren’t always followed.
The guidelines say that blood samples should take no more than three days to arrive at labs for testing. But the newspaper investigation revealed that only two states, Iowa and Delaware, met that standard 99 percent of the time. And there remains a substantial problem of transparency. The Journal Sentinel requested data from every state and the District of Columbia, but 21 states and Washington, D.C., have refused to release hospital-by-hospital information.
Until there is a national, enforceable standard — one overseen by the Joint Commission — we worry that newborn testing will continue to be conducted in a haphazard fashion. These tests are too important for families and children.
Hospitals need a common standard with teeth — and their track records should be open to public inspection.Milwaukee Journal Sentinel