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Insurance struggles in pediatric headache care

Victoria Karian, CPNP
Conditions and Diseases
September 11, 2023
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Most of the time, I enjoy my job as a pediatric nurse practitioner working with chronic headache and pain patients. I enjoy the relationships with the families, figuring out what can help manage the headaches and life issues best to allow optimal functioning. I enjoy performing certain procedures, like Botox for chronic migraines or injection procedures for my patients, which very often improve their headache profile. I can even find enjoyment in the scheduling logistics.

However, what I really do not enjoy is dealing with insurance companies. For any of the newer medications, you are always required to complete a prior authorization, which involves justifying why you’ve made the clinical decision to start a certain medication. For the most part, if someone is over 18 and meets the basic criteria, you can obtain one of the appropriate medications for them to try—whatever is on the insurance company’s formulary. It’s a process, but it usually works out OK. When a family changes insurance, you must go through the process all over again. It’s time-consuming but feels reasonable.

Even for Botox approvals, when patients meet the criteria to qualify for it (enough migraine days—15 per month, tried enough medications and other strategies), and are old enough—over 18—the process is almost reasonable. For those under 18, we also try to get it approved, and are about 50 percent successful. Insurance companies are a bit more open to approving it for those under 18 if you can make a solid case. It will often involve a peer-to-peer interaction—an extra step for your fun and enjoyment.

For many years, we’ve been performing occipital nerve blockades and trigger point injections for those who are appropriate—those with cervicalgia, occipital neuralgia, chronic tension-type headache, and even chronic migraines. It was a procedure that was more available to younger patients and those who had been denied everything else. The procedure is often quite helpful in reducing headache burden, especially for those with neuralgic pain. The medications we use—lidocaine, bupivacaine, and sometimes triamcinolone—are older medications and not terribly expensive. If effective, the procedures are done about every six weeks (approximately one and a half months). We rarely had trouble getting these procedures approved; they weren’t even on the radar of problematic procedures. Until now …

For the past two months, insurance companies have been denying the occipital nerve blocks as “experimental and not medically necessary,” even when you use the correct and appropriate diagnosis codes. They still seem to be approving the trigger point injections. Patients are now receiving bills for these procedures, often backdated to before the denials. When you call and attempt to appeal, including a peer-to-peer or whatever is required, you are simply denied, full stop. It is now deemed “experimental or not medically necessary.”

I think it usually starts with one company leading the way for all the other companies. They decide that, in their infinite wisdom, these procedures are now off our patients’ list of approved procedures. They have removed another tool from the pediatric headache clinician’s toolbox.

What is not commonly known among the public is how much clinician time (especially nurses and NPs) is spent dealing with these issues—writing letters of medical necessity, completing prior authorization forms, composing appeal letters, conducting peer-to-peer reviews with insurance personnel, and enduring being put on hold and transferred multiple times when calling the insurance companies. This is on top of maintaining a full clinical schedule. There is minimal support for hiring someone to manage this aspect of the job.

This is a seriously flawed system and one of the reasons we need to consider a Medicare-for-all system or something similar. You cannot imagine the time wasted and the frustration that accumulates; it seems like every day, it’s getting worse. Clinicians only want the best care and options for their patients and families. When dealing with a pediatric population, we already have fewer options than other providers. There is already a shortage of headache-specific providers. I can’t imagine that contending with these roadblocks to appropriate care is attractive to those we are trying to entice into the profession.

Vickie Karian is a nurse practitioner and author of Getting Ahead of Pediatric Headaches: A comprehensive guide for nurse practitioners to manage headaches in children and adolescents.

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