Jacy Morgan-Barnum heeded recommendations for avoiding Sudden Infant Death Syndrome (SIDS) and put her baby boy, Bradley, to sleep on his back.
As a result, like a growing number of infants, he developed a flattened head, or plagiocephaly. The fix prescribed by Bradley’s doctor — a specially-tailored helmet to coax his soft skull back into symmetry — worked, but wasn’t covered by the family’s health insurance plan.
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How to appeal
For information about filing complaint about an insurer’s denial for medical care , visit: https://insurance.utah.gov/health/review.php.
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Flat head syndrome
The U.S. government’s “Back to Sleep” campaign, launched in 1994, has reduced rates of Sudden Infant Death Syndrome, but has coincided with an increase of children developing misshaped, or flattened heads.
Some cases are resolved by giving babies “tummy” time during the day, but others require cranial remolding helmets. Placid babies are more at risk.
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So Morgan-Barnum, taking advantage of a little known benefit of the Affordable Care Act, is fighting back.
New rules in the health law allow consumers to seek a second opinion on care denied or delayed by their insurance plan. If appeals to their insurer fail, they can request an independent review of their coverage denial.
The reviews are meant to ensure coverage decisions are based on medical need, not just financial considerations, said Deborah Reidy Kelch, a researcher at the California HealthCare Foundation. "People want some confidence that medical professionals have looked at their case and given it a fair, unbiased review."
Only a fraction of the thousands of Utah consumers who file complaints with the state Department of Insurance seek reviews. But those who do have good odds of prevailing.
Regulators commissioned 10 reviews in 2011 and 40 in 2012, finding in favor of the patient in 40 percent and 32 percent of the cases in those years.
"It’s a good process for cases where there’s some gray area," said assistant insurance commissioner Tanji Northrup. "When we investigate a complaint, all we can do is see if the insurer processed the claim according to its policy. But if a doctor is arguing something is medically necessary, that’s where the appeals process can help."
Measuring their success nationally, however, is complicated by differences in how states handle and enforce the reviews.
"What’s working and what’s not working? Are there enough safeguards in place? Do people feel it’s truly an independent process? These are important questions," said Kelch. " I don’t know if we really know that yet."
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In Utah’s federally-approved process, the insurance department picks the reviewers, companies that hire medical experts solely for that purpose. They must be accredited by a nationally recognized accrediting agency and adhere to policies protecting patient privacy and impartiality.
A reviewer’s decision is final and binding.
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Taking the doctor’s advice » Morgan-Barnum suspects consumers don’t understand their rights.
"The only reason I knew to file a complaint was because someone on a plagiocephaly chat board recommended it," she said.
The Ogden school teacher and mother of two hadn’t heard of "flat head syndrome" either, until her son was diagnosed with it. So if she had a choice of insurance plans — her Altius plan was picked by her employer — plagiocephaly wouldn’t have factored into the purchase.
As she later learned, page five of her medical benefits brochure explicitly excludes coverage for helmet therapy for "benign" plagiocephaly.
"Treatment of this condition is primarily cosmetic in nature," Altius explained in a letter to the insurance department. The policy covers helmets for deformities resulting from disorders such as craniosynostosis, a premature closing of sutures in the skull, but only with prior authorization, the letter said.
Bradley’s doctor, Mindy Boehm, concedes only the most severe cases of plagiocephaly put children at risk for jaw pain, migraines, chronic ear infections, impaired speech and psychological problems.
"It is cosmetic. I won’t deny that," she said. "But infants acquire this because of a safety precaution we’re telling them to observe."
Repositioning and physical therapy didn’t work for Bradley. And waiting for his head to round out on its own risked missing the window for reshaping it, said Boehm. "By age 2 if a child’s head is still skewed, it’s going to stay skewed."
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