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The parents who bring their infants, toddlers or young children to my pediatric neurology office know that something is wrong.  The child isn’t meeting developmental milestones, but they can’t understand why. They come desperate for a diagnosis, a treatment plan.  I want that for them too. But, too often, insurance barriers mean that the wait to understand their child’s struggle isn’t over when they reach my office – it’s only just beginning.

I’ll conduct a thorough examination of the child, talk with his or her parents and review medical records.  I’ll often order genetic testing starting with a chromosomal microarray – considered the first-tier genetic test for a child with developmental delays. More often than not, insurance companies will deny the testing.  Or they will approve only a cursory test, Fragile X, for instance, instead of the necessary broader analysis. 

They want to know if a genetic counselor also believes this panel of tests is necessary.  This response discounts my years of medical education, experience and specialty training.  It also belies an important reality: pediatric geneticists are even rarer than pediatric neurologists.  The wait for a genetics specialist appointment can be months, sometimes more than a year.  

More than just a nuisance, insurance companies’ delay tactics have consequences for the children I treat.  Delayed testing means delayed treatment, which can allow muscular or neurodegenerative complications to advance.  Parents’ agony is all the worse because targeted medicines do exist to treat some of these devastating diseases, such as spinal muscular atrophy, known as “floppy baby syndrome.”

The rare disease community, including parents, advocates, genetic services, and therapeutic companies, became so fed up that they devised other ways to finance or provide for the testing these children need.  In some cases, this lets insurers off the hook. But it’s not a long-term solution, or a complete one, because insurers’ coverage objections don’t end with testing.

Once testing confirms a diagnosis, I prescribe an appropriate treatment regime.  It often triggers a lengthy prior authorization process. Yes, treatments for rare conditions can be expensive.  I understand the insurance companies’ financial imperative. But my imperative is to get timely treatment for the child in front of me, especially if the family has already lost weeks and months waiting for testing and diagnosis.

In some instances, insurers object because I’ve prescribed a medication that isn’t FDA indicated for children—or for a child as young as the one being treated.  It’s a flimsy excuse. This prescribing practice is not uncommon. I think of seizure medications for children with epilepsy as an example. Multiple studies demonstrate the medication’s effectiveness in children younger than what’s its FDA approved for. Yet insurers often stand by their denial, or require multiple appeals before providing coverage.   This means still more delays for sick patients and anxious parents.

Waiting is always difficult for children – waiting for dinner, waiting for a turn on the swing set, waiting for the long car ride to grandma’s house to finally end.  But asking them to wait for testing and treatment that could dramatically improve, even save, their lives? Here insurers ask too much.  

And like the parents and young children I treat, I’m running out of patience.

Safi Shareef, MD, is a pediatric neurologist practicing in Plano, Texas.

This post is part of IfPA’s “By All Accounts” blog series.  Each month, a different guest author – and a different story – adds a new piece to the common narrative of how insurance practices meant to control costs are instead hurting patients.

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