After decades of treating cancer, it became part of my own family’s story. My mother is facing lung cancer, and my father melanoma. I went from oncologist to caregiver in seconds. I experienced firsthand the fear, waiting, and endless calls with insurers. I learned how powerless it feels when the people making decisions about care aren’t the ones in the exam room.
Those experiences gave me a deeper understanding of what my patients face today. Every week in my Brevard oncology clinic, I see how insurers insert themselves into decisions that should belong to doctors and patients. I prescribe the therapy that best fits a patient’s unique biology, the one I believe offers them the strongest chance at the right outcome, and sure enough, their insurer steps in to say no.
Instead of the FDA-approved, guideline-supported medicine I chose, they insist the patient “try and fail” or demonstrate intolerance to a different drug, one that may carry greater risks. They call it step therapy or therapeutic substitution. I call it practicing medicine without a license.
Cancer doesn’t wait for bureaucracy to catch up. Yet insurers and the pharmacy benefit managers (PBMs) routinely substitute or delay life-saving cancer treatments, all in the name of putting profits ahead of clinical evidence and the treatment plans chosen by a doctor and patient.
These policies have crossed a dangerous line. Each forced “step,” where a suboptimal treatment is required first, gives cancer cells another chance to adapt and grow stronger. For patients with chronic lymphocytic leukemia (CLL), the most common form of adult leukemia, and many other cancers, those decisions can literally change the disease prognosis.
I’ve seen it firsthand. In one case involving mantle cell lymphoma (MCL), a rare, aggressive blood cancer, an insurer denied the targeted therapy I selected and required an older drug known for heart-rhythm side effects, despite well-documented safety concerns. In cancer care, timing matters. Starting with the wrong therapy can close the window for the best possible outcome.
These aren’t rare exceptions. I’m overruled by insurers several times each week. The people making these decisions are rarely oncologists, sometimes not even specialists at all. I’ve had to argue my medical decisions with doctors working for insurance companies, often former primary-care physicians or other physicians without oncology training. Yet their word outweighs mine.
Patients often learn about these substitutions after the fact. They leave my office confident in one plan, only to discover later that their medicine has been quietly swapped for another. That erosion of trust is one of the cruelest side effects of our insurance system.
The financial incentives behind this are just as alarming. PBMs, the middlemen controlling drug formularies and prices, skim hidden cuts of nearly every prescription filled in America. They steer patients toward drugs that offer them the biggest rebate, not the best outcome. It’s a system that feels more like loan-sharking than health care, taking a cut at every step without adding value. In my view, that’s legalized profiteering. No one elected these entities, yet they wield extraordinary power over who gets treated, when, and with what medicine.
Insurers have crossed a line, and it’s time for Florida and the nation to push back. Congress came close last year to passing PBM reform, but lobbying efforts stalled it. Now lawmakers are again considering measures to bring transparency to insurance middlemen. They should also move to pass the bipartisan Safe Step Act, which would set common-sense limits on step therapy and ensure timely exceptions when treatment could cause harm or delay care. These are straightforward, patient-centered reforms that would help restore what matters most: trust between patients and doctors.
Cancer already demands every ounce of expertise, courage, patience and hope a person has. No one should have to fight their insurer, too. Behind every denial or delay is a family waiting, worrying, losing precious time. Florida families deserve a system that trusts the doctors dedicated to saving lives. Let doctors treat. Let patients heal.
Martin F. Dietrich is a medical oncologist at Cancer Care Centers of Brevard and an assistant professor of internal medicine at UCF College of Medicine.
