A Mother's Fight for Expedited Care

In December of 2022 Stephanie, a kidney transplant recipient, had a hemoglobin level of 8 (usually transfused at level10 at Children’s Hospital) and an iron level of 5 (critical) which would require a treatment of iron infusions. It wasn’t until a month later, at the end of January 2023, that she started iron treatment at an infusion center. Due to prior authorization delays, Stephanie’s critical care was stalled, even though the doctor’s office put in the request for plan authorization as urgent, it wasn’t treated as such.

As her medical proxy due to the severity of Stephanie’s condition and disability, her mother Lauren began calling the insurance company and was told they had two weeks to approve the requested service. When she stressed that the doctor had indicated the matter as urgent, she was told it would be escalated within their system. However, the next day the status remained unchanged and only after repeated phone calls did the insurance company change the prior approval window to within 72 hours.

Stephanie’s mother, Lauren, has worked for years as a healthcare advocate and was well versed in how to gather data and handle insurance appeals, and yet the process was still daunting, drawn out and complicated. Throughout this experience, Lauren wondered “what is happening to other patients who don’t have this knowledge?”

Stephanie is currently covered by private insurance under the disabled dependent provision, and is also covered by New Jersey state Medicaid under disability. This resulted in some confusion when her parents were also told that prior authorization was required for both private insurance and Medicaid. This is incorrect – it is only required for the primary, and Medicaid follows suit, but families may not be aware of this. Finally, the prior authorization department called after the close of business Friday prior to a three-day weekend saying her iron transfusions had been approved but now needed to be scheduled, further delaying necessary treatment. In the meantime, Stephanie, a medically fragile patient, was dizzy, sleepy, and almost ended up in the ER with a completely preventable hospitalization for a simple outpatient procedure. Prior authorization should not be needed when a condition is life-threatening, or a procedure is time-sensitive.

Stephanie, now 31, has five life-threatening conditions that require full-time care coordination, which is mostly provided by her mother. In addition to managing her daughter’s health, appointments, medication, insurance appeals, and prior-authorization, Lauren dedicates her professional life and the remainder of her personal life to advocating for better health coverage and care in the United States.