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When bureaucracy leads to patients falling through the cracks, a young boy finds himself in danger of bleeding to death.


Diagnosed with hemophilia, 15-year old Jason had to simultaneously contend with his blood’s inability to form clots and the danger of bleeding uncontrollably. Jason’s oncologist had him on a once-daily oral medication that can slow the spread of his disease by blocking a specific protein the disease needs to thrive.

One day, Jason missed his footing on the stairs at home. Falling, he hit his thigh and developed a significant hematoma, common with hemophiliacs. He now urgently needed a specific recombinant factor injection to help his blood clot, and quickly.

Jason’s oncologist quickly prescribed the necessary self-injected medication to be taken at home. Prior authorization was received, however the PBM handling Jason’s case refused to allow the practice’s pharmacy to fill the script, so they forwarded it to the PBM-mandated pharmacy. Unfortunately, they could not fill the prescription, and without informing Jason or his doctor, they outsourced the prescription to yet another pharmacy.

Recognizing the urgency of the situation, Jason’s mother, a full-time nurse, stepped in to see how things could be expedited. She made numerous phone calls, verifying that the pharmacy she used to work with before her insurance changed had the medication in stock and, due to a contract with the PBM, was able and willing to ship it out the next day. Not wanting to lose out on the business, the original PBM-mandated pharmacy stepped in and vetoed the plan, stating that as it had already been ordered from them, there could be no cancellations.

With no alternative, the doctor sent Jason to the hospital emergency department to receive the necessary injection.

Adding another layer of unnecessary problems to the mix, the PBM suddenly claimed that there had been no prior authorization filed for the prescription. Undeterred, the practice pharmacist spent hours trying to get it all done as soon as possible, so that Jason could get the medicine he needed.

Finally, just when it felt like the situation was starting to be resolved, the PBM pharmacy representative on the phone belatedly realized that the medication in question was for injection and stopped the process. Prescriptions for injections, she said, had to go through a different department. Unfortunately, it was now 5 p.m. on a Friday and the PBM offices were closed for the weekend, so they would have to wait to submit the prescription until Monday. Because of his hemophilia, young Jason was now in danger of developing a dangerous complication that could require emergency surgery and a long hospital stay if not treated immediately.

With no alternative, the doctor sent Jason to the hospital emergency department to receive the necessary injection. While this prevented any life-threatening occurrences, it incurred an enormous expense for his family and insurer, one that could easily have been avoided. Due to the astonishing bureaucracy, a patient fell through the cracks, with no one outside his personal doctor standing up to take responsibility or showing the slightest concern.

Patients do not walk off the pages of a textbook or an encyclopedia of illnesses and their recommended treatment. Each case is individual and ought to be treated as such, in a thoughtful, intelligent, holistic manner. Additionally, patients do not stop treatment just because it is the weekend or after the phone lines shut down. The more control PBMs are given over patient care, the more sweeping and infuriating their bureaucracies become, and, ultimately, the more dangerous their decisions and actions prove to be.