Pennsylvania health officials are getting their first-ever look at the number of infants born dependent on opiates and opioids, but the data collection initiated last month under Gov. Tom Wolf’s statewide disaster declaration could end soon.
The reports documenting infants diagnosed with neonatal abstinence syndrome (NAS) started trickling into the state Department of Health last week, according to agency spokeswoman April Hutcheson. The NAS data collection is among initiatives underway as a result of the Jan. 10 state emergency declaration in response to the growing addiction crisis in the state.
Neonatal abstinence syndrome is a collection of symptoms associated with withdrawal from opiates or opioids seen in newborns. The symptoms, including sweating, fever, violent shaking, intestinal distress and inconsolable crying, typically appear within a week after birth. Symptoms can be mild or severe and last a week or several months. Severe symptoms might require medical interventions to taper the infant off the narcotics.
“This data is yet another source of information to determine some of our communities most affected by the opioid crisis in Pennsylvania,” acting Health Secretary and Physician General Dr. Rachel Levine said. “We will be able to use this data to track where our most vulnerable are being born with symptoms of withdrawal so we can target intervention techniques as we work to reduce the number of cases of NAS.”
But the disaster declaration is scheduled to expire April 10. The governor could renew the declaration for another 90 days, but once the declaration ends, so does the mandate requiring hospitals and birthing centers to report NAS diagnoses to the state.
The prospect of losing the ability to collect the data concerns some child welfare advocates who have been urging the state for years to add NAS to the list of conditions that health care providers are required to report to the state. Currently, Florida, Georgia, Kentucky and Tennessee are the only states that mandate NAS reporting.
“Clearly it’s good that they are doing it, but they need to make sure the foundation continues,” said Cathleen Palm, founder and executive director of the Center for Children’s Justice in Berks County. “There really is no statutory or regulatory requirement to do it.”
Previously, NAS was only tracked using births paid by Medicaid, the government funded health insurance for low-income and people with disabilities. But the information was limited since Medicaid paid for only 32 percent of births in the state between 2012 and 2016.
While the mandate to report the NAS data ends with the disaster declaration, it will provide state officials with a baseline for which counties and communities are seeing highest occurrences, and how prevention and intervention resources there should be targeted, Hutcheson said.
“It’s more data than we have right now,” she added. “It’s definitely a start.”
State health officials had planned to include NAS in a larger regulatory package updating reportable illnesses, a process that typically takes 18 to 24 months, Hutcheson said. She added the data collected during the disaster declaration will be used in that package. In the interim, hospitals and birthing centers could continue to submit NAS data, but they won’t be mandated, Hutcheson said.
Palm wants to see the state put something in place to ensure that data collection continues while the formal regulatory process to make NAS a reportable illness takes place.
“We need to make sure no urgency is lost,” she added.
More complete data will provide a clearer idea of the scope of the problem of prenatal drug exposure, but it’s what the state does with that data that concerns Beth Bitler, program director for the Pennsylvania Family Support Alliance. She hopes that it is used to ease the ability to access drug treatment for pregnant women and mothers who are drug dependent rather than create more barriers that can result in poor outcomes for children.
“It’s good to have the data to understand the problem, but what happens to that data?” Bitler added. “The data is one piece of the larger picture of what happens to these children and their families.”
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