With thanks to Dr. David N. Korones and JAMA Neurology

“I’m as Mad as Hell and I’m Not Going to Take This Anymore!”

So shouted news broadcaster Howard Beale in the iconic 1976 film “Network” as he decried pollution, unemployment, inflation, crime, and all that was wrong in the world back then. And so shouted I, as I slammed down the phone after yet another denial from an insurance company—this time denial of treatment for an 8-year-old little girl with a brain tumor.

She is a happy, high-energy girl who showed only the slightest and most innocent of symptoms. Although these subtle changes did not slow her down in the slightest, it was enough to warrant additional investigation.
Her physician ordered a magnetic resonance imaging scan, and to his surprise, she had a large inoperable brain tumor. Fortunately, a biopsy showed it was a low-grade glioma, a treatable, potentially curable tumor. These days we can get a complete profile of the genetic makeup of children’s tumors, and that profile revealed a mutation in her tumor indicating that an oral US Food and Drug Administration (FDA)–approved drug could be effective. Such drugs (often referred to as targeted therapy) are an increasingly used option for children with cancer, and certainly an attractive option for this young girl. The other choice for treatment, the previously established standard, was a year of weekly intravenous chemotherapy. Her parents and I talked long and hard about these options. I explained that chemotherapy is the standard, but targeted therapy is showing promising results with less adverse effects and is rapidly evolving as a new and more humane standard. Not surprisingly her parents were quick to say “we’ll take the pill,” and the young patient promptly started pill training, enthusiastically honing her pill-swallowing skills with Tic Tacs (Ferrero Group).

“Denied,” the insurance company said in so many words when the prescription for targeted therapy was sent to them for review and approval. They went on to explain in their terse letter of denial that the drug is not FDA approved for this specific indication. The letter was not signed by a human being and provided only a phone number with a tangled algorithm of menu options. I did what we so often do when patients are denied a drug or service that we feel they should have, I asked for an urgent (72-hour) appeal. I wrote a letter outlining the rationale for the targeted therapy option and provided references, with data to support that this approach is not voodoo or magic. It really works! We got another anonymous communication that there is no 72-hour appeal, and we will have to wait the standard 30 days. That is a long time to wait when you have a brain tumor. At this point, I also wrote a letter that I did not send, a letter that served as an outlet for my vitriol, filled with many words I would not want my 8-year-old patient to see. It hangs in our nurses’ office, a testament to the daily frustrations we face getting pediatric patients with cancer the medical care they need.

Although that second letter was a necessary catharsis and a feel-good moment, there were more frustrations to follow. I called in an attempt to reverse their decision to wait 30 days to make a decision, requesting an
expedited review. After 30 minutes of pressing 5, then 3, then 8, then 1, and hearing polite and agonizingly slow moving voice messages, I finally reached a human being, who very kindly told me that I am in the wrong department and needed to call the HELP number on the family’s insurance card. So, I called the family, got the number, and started anew, again a morass of phone menus mixed with interminably long holds, and multiple transfers, each new person (or menu) asking for the same information about my patient. Finally, I reached a human being who told me they don’t have anything on record about my patient and couldn’t help me.

My options were 2-fold: I could go outside and scream as Howard Beale did in Network in 1976, “I’m as mad as hell and I’m not going to take this anymore!” or I could call my congressman. I did both. My congressman sent me to a NY State Assemblywoman with expertise in health insurance snafus. She, in turn, put me in touch with an insurance-government liaison, who connected me with one of the insurance company co-executives who arranged the emergency appeal I was hoping for. The next day an independent, non–insurance affiliated pediatric neuro-oncologist called me and listened to my patient’s story. He immediately replied that this is a sound approach to therapy, and he would recommend approval. The following day, the medication was approved.

I wish this was a stand-alone story, but it is not. Every day the phone, email, and text messages mount: an antinausea medication is not approved, oral chemotherapy is denied to a child because it is in liquid form, and only tablets are approved, brain surgery is denied because the patient has the misfortune of not living in the same state as the neurosurgeon who has the unique skill set to remove it, an insurance company that had
previously approved an essential therapy for one of my patients now, for inexplicable reasons, denies refills half way through her prescribed course of treatment.

If we must make these dreadful calls for approvals of drugs and services, I wish it was as simple as calling a number at an insurance company and having a conversation. But it is not.  Denials come on letters without names or contact information, a situation I fear now will only become worse. If a phone number appears, we clinicians take a deep breath, because we know it will be a long call, much of which is spent on hold. If we talk to a human being, they are often kind, but they do not share their last name or other department, and all my identifying information is needed again.  My call today was “only” 33 minutes. I made out an invoice while I waited and sent them a bill, charging them $350 per hour for my time ($192.50). I do this from time to time, and not surprisingly, I’ve never received a response or a payment for the time I could be spending taking care of patients. But like the vitriolic letter I wrote, at least it provides some release for my mounting frustration.

I believe there is a method to these denials of services. Denial letters are anonymous, making it hard and time-consuming for us to push back. It is a system designed to rob us of time and to plunge us into a byzantine world of rules and regulations that we do not understand. It is designed to minimize human interaction and takeaway the heart that should be a part of good medical care. It is designed to wear us down, so that we say “screw it ,I’ll just try something they’ll approve.” Something cheaper.

I, for one, am still “mad as hell and I’m not going to take this anymore.” Perhaps the more we push back, send them bills for our time, follow that up with bill collectors, call our congressional representatives, and summon our hospital leadership, we can gather a chorus of physicians, patients, hospital leaders, and politicians who all open their windows and, following Howard Beale’s lead, scream in unison that they, too, are mad as hell, and it is long past time to change this unjust system of care. To paraphrase Howard Beale, “our children, our patients are human beings, goddammit, their lives have value!”

Published Online: April 21, 2025.
doi:10.1001/jamaneurol.2025.0782

Conflict of Interest Disclosures: None reported.

Additional Contributions: We thank the patient’s
parents for granting permission to publish this
information.

1. Lumet S. Network film transcript. Accessed
March 18, 2025. https://sfy.ru/?script=network