New Guidelines Put Preemies at Risk

By Dr. Suzanne Staebler

The American Academy of Pediatrics’ new guidelines on RSV treatment, announced yesterday, sparked immediate and ardent debate, pitting premature babies’ families and care providers against the AAP in a showdown about who deserves preventative care.

The guidelines on treatment for RSV – respiratory syncytial virus – draw a line in the sand, endorsing treatment only for very premature infants born before 29 weeks gestation. As a neonatal nurse practitioner who’s spent over 25 years caring for premature infants, I’m disturbed by the restrictiveness of this stance.

Nearly 70 percent of premature infants are born between 30 and 35 weeks gestation. That’s a significant and vulnerable population, whose underdeveloped lungs and fragile immune systems put them at a higher risk for lower respiratory infection, wheezing episodes, hospitalization and potentially long-term asthma and breathing complications. Worse, AAP’s eligibility guidelines disproportionately affect minority and low-income families, whose babies are more likely to be born premature.

Lest the term “guideline” confuse, let me be crystal clear: AAP guidelines inform insurers, as well as Medicaid, on coverage and reimbursement for therapies. AAP’s stance is more than pontification; it sets the bar for which preemies will receive treatment for RSV prevention. And it excludes a hefty majority of those preemies, exposing them to added risk unnecessarily.

These babies and their families deserve better.

Just consider, preventative treatment for RSV marked a significant step forward for preemie care. In the not-too-distant past, we had no choice but to face the risk of RSV and related complications. The virus is, after all, remarkably common. But while many babies overcame it after a few days of fever and nasal congestion, preemies were not so lucky. After rushing these babies to the emergency room, we providers could do little more than put the infants on a ventilator to support breathing and offer comfort to their families.

With the introduction of palivizumab in 1998, providers like me saw the story change. A monthly injection of the medication provides premature babies with enough antibodies to fight off RSV; monthly injections throughout the RSV season (roughly November to March) help to decrease the severity of RSV and related respiratory tract infections, hospitalization and longer-term complications. Data existed to support the treatment’s use in premature infants, so we health care providers erred on the side of safety to prevent RSV and related complications.

But now AAP has thrown caution to the wind, taking a huge step backward for preemies’ families. The AAP justifies its stance by arguing that RSV hospitalization rates are “similar” in term and preterm infants (differing by only 1.2 hospitalizations per 1,000 births). But basic statistics don’t tell the whole story.   Preemies are more likely to suffer severe bouts of RSV, which require ICU care and ventilator support. The severity of their illness often results in childhood asthma, a disease that cost the U.S. health care system an estimated $12.7 billion in 2003. Non-white or low-income children with asthma typically generate even higher care costs.

Splitting preemies into the haves and the have-nots is inconsistent with pediatric care. These premature babies enter the world under tense circumstances and extreme anxieties.   We pour hundreds of man-hours and thousands of dollars into their care in the NICU. Discharging them from the hospital without allowing their community care providers to administer preventative treatment leaves them to face RSV unprotected, with varying degrees of success.

To me, that feels worse than unprofessional; it feels downright unethical.

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Dr. Suzanne Staebler has been a Neonatal Nurse Practitioner for 22 years and currently practices in Atlanta, Georgia.

About AfPA

The Alliance for Patient Access is a national network of physicians dedicated to ensuring patient access to approved therapies and appropriate clinical care.
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