Forced to Fail: How Insurance Companies Override Your Doctor's Orders
In my previous articles, I've shared my experience living with Long COVID for five years and explored how systemic failures impact both patients and medical professionals. Today, I want to expose a particularly cruel aspect of chronic illness care: the step therapy system—a bureaucratic maze that prioritizes insurance profits over patient well-being.
The Insurance Obstacle Course
Picture this: You've managed to find one of those rare doctors who actually listen, believe your symptoms, and have the expertise to help. Victory, right? Wrong. You're now thrust into the never-ending labyrinth of the U.S. medical insurance system—HMO, PPO, in-network, out-of-network, percentages covered, out-of-pocket fees, co-pays, deductibles. It's like facing a corporate troll that demands you solve three riddles and complete an epic quest before accessing basic healthcare.
Step Therapy: The Authorized Torture System
Over 70% of patients are required to try and fail cheaper medications before insurers approve prescribed treatments—a process euphemistically called "step therapy" or, more accurately, “fail first.” Step therapy isn't just bureaucratic inefficiency—it's sanctioned medical experimentation on vulnerable patients. Insurance companies essentially tell doctors: "We don't care what you think will work best. Make them suffer through our cheaper options first." When patients and healthcare providers request access to evidence-based treatments, they're routinely denied, dismissed, or forced through administrative gauntlets designed to exhaust and discourage them.
The Trump administration recently expanded step therapy in Medicare, giving insurance companies more ways to make patients try cheaper drugs first. They claimed this would lower costs, but it mainly gave insurers more power to deny expensive treatments.
Pharmacy benefit managers (PBMs) and private and public health insurance companies insist that step therapy is necessary to control healthcare costs. While they maintain that step therapy does not harm patients, physicians, patients, and pharmacists strongly and repeatedly disagree. Evidence demonstrates that many insurance companies have created an arbitrary step therapy drug list with little regard for personalized medicine. It’s worth noting this is just one example of countless practices where insurance companies systematically override medical expertise, ignore clinical evidence, and deny treatments that doctors know will work.
How is this legal? How do we accept a system where insurance companies override medical expertise to protect their bottom line?
My 4½-Year Journey Through the Medical Circles of Hell
When my neurologist wanted to treat my chronic migraines with preventative medication, step therapy turned what should have been straightforward treatment into years of torture. For 4½ years, I endured 15 or more migraine days each month—occipital migraines that felt like hot knives stabbing into my skull. It’s estimated that about 12% of the population experiences migraines. For those who don’t experience migraines, this visual aid provides a glimpse of the devastation that an attack can include. Many folks are surprised to see that unlike a headache there can be days of lead up, pain, and recovery that suck even more of your life away.
When you consider that for someone like me experiencing chronic migraines, the timeline often realistically means only having 2-3 days of “not migraine” between each attack. Trying to function like a regular ol’ human being becomes impossible, not only because of the back-to-back migraine cycles, but because you are living with the constant dread of knowing the next migraine is imminent. It feels impossible to plan anything and to exist with any quality of life. As someone who is also juggling other invisible illnesses that include additional chronic pain and fatigue, life can start to look very bleak.
The human cost of suffering and following the step therapy medicine guidelines was devastating:
Migraine pain & duration increased over time
Lost significant work and income - earning cut by ~50%
Stopped performing (I'd been a professional actor/improviser for nearly 40 years)
Became increasingly isolated from even my closest friends and family
Missed celebrations and canceled plans repeatedly, so often, the invites stopped coming
Couldn't participate in activities I loved, hobbies, and even the smallest joys
Spent countless hours in dark rooms with ice packs, heating pads, crying, and forcing my cat to snuggle
Struggled with basic tasks: cooking, cleaning, errands, and personal care had to wait until I could muster the rare occasions I could muster energy
Questioned how long I could survive this constant agony
Trigger Warning: Mental Health and Suicide Ideation
There is a very real mental health toll—something we don't discuss enough when talking about step therapy's "cost-effectiveness." Living with constant, uncontrolled pain while being forced through ineffective treatments isn't just physically brutal; it's psychologically devastating. The research is clear: people with chronic pain are up to 3 times more likely to experience suicidal thoughts than those without it. I am one of those people who found myself on more than one occasion writhing in agony, contemplating the pros and cons of living this way, versus not living at all. This is from someone my doctors and therapists all categorize as having an unusually positive mindset and outlook. I have not had ideations like this before. I never took any actions, but was deeply alarmed that my body, spirit, and brain were in so much suffering that there were moments where ending the pain was even entertained.
This isn't weakness or drama—it's the predictable result of trying to survive in a body under constant distress while simultaneously fighting to be believed and supported. When insurance companies force patients through months or years of failed treatments, they're not just delaying relief; they're compounding trauma. Every failed medication, every month of continued suffering, every barrier to effective care sends the message that your wellbeing is something that can be stamped “denied”.
The Pharmaceutical Gauntlet
Over those 4½ years, I was prescribed different classes of drugs that caused:
Hallucinations
Severe nausea and vomiting
Vertigo
Painful cramping
And more delightful side effects
Each new medication brought an emotional rollercoaster—reading terrifying side effect lists, discussing risks with my doctor, and deciding it was worth it if this one might work. The physical toll was immense as my body processed and expelled these chemicals. All while juggling how much of the triptans and pain killers I could take - often no more than 48 hours - to at least buffer the worst continuous migraines, along with the other symptoms of fibromyalgia, EDS hypermobility, and Long COVID that didn’t just take a vacation while migraines were in town. The financial burden was crushing—paying hundreds of dollars for medications I'd use for only a week or two before stopping due to unbearable side effects.
None of them worked. Not one even almost worked or had any positive impact on my pain.
The Right Stuff
Finally, we reached Ajovy—the medication my neurologist had wanted to prescribe from day one. But Kaiser deemed it "too costly" without forcing me through their cheaper torture chamber first. The irony? Ajovy's side effects and long-term impacts are minimal compared to the drugs I was required to endure.
My neurologist—an expert in her field—suspected Ajovy (a newer class of drugs, CGRP inhibitor) was the right choice for my specific type of migraines (occipital). Instead of being empowered to practice medicine, she watched me suffer for over four years while I vomited, hallucinated, cried, and deteriorated—all so Kaiser could avoid a $700–$1,400 monthly price tag for a medication without a generic equivalent.
I'm not a medical test subject. I'm a human being who deserved more humane care than I received.
A Bit of Hope
I now pay $65-120 monthly for Ajovy shots. Since starting them several months ago, I've gone from 15+ migraine days per month to just 2-3. I still have occipital nerve pain most days, but that doesn't escalate to full migraines. Like most folks with chronic pain, getting to pain-free is unrealistic, so the goal becomes minimizing pain to improve functionality and quality of life.
I can feel the warmth in my chest again, just remembering the first time I went 10 consecutive days without a migraine. For someone on my pain journey, that counts as a miracle. It was pure bliss. I cried. My family cheered. My friends rejoiced. I have a portion of my life back.
I still need occipital nerve block injections and keep triptans on hand, and watch my pain meds closely, but I only reorder them every few months now instead of constantly. I can also finally focus on addressing the other chronic pain symptoms that were previously overshadowed by the desperate daily battle to survive migraine hell.
I can’t help but wonder what pain and suffering could have been prevented had my doctor been empowered to trust her training, experience, and gut rather than making me jump through ineffective hoop after ineffective hoop.
The Cruel Limits of "Covered" Care
The insurance barriers extend beyond step therapy. Kaiser actually recommends acupuncture, massage, and chiropractic care for fibromyalgia, hypermobility, and chronic migraines. The cruel punchline? They severely limit access to these treatments they acknowledge as beneficial.
Acupuncture: Limited to 8 visits per year, as if chronic illness magically becomes "temporarily not chronic" after visit number 8. I typically start feeling relief right when—poof—my visits are exhausted. Then I anxiously wait for the calendar to reset so I can begin the process of "proving" I deserve another 8 sessions to last the entire next year. (Some plans theoretically allow additional visits with in-network providers, but good luck finding one accepting new patients.)
Massage and Chiropractic: Again, some plans offer partial coverage for “in-network” providers, while making the process of becoming certified nearly impossible. Under other plans they are not covered at all. Why, if we all know it helps, Kaiser tells you it helps, then wave buh-bye and wish you luck paying out of pocket.
Physical Therapy: Bureaucracy Meets Absurdity
Physical therapy adds another layer of institutional madness. Beyond limiting total visits, insurance requires my primary care doctor to designate a single body part for treatment, and the physical therapist can only work on that specific area.
Think about that restriction in the context of fibromyalgia and hypermobility. Pain is constant in some areas (my neck, shoulders, and upper back never stop hurting) while migrating unpredictably to others. Some days my right ankle feels like it can't bear weight; the next day it's my left hip that's screaming.
Once again, we see artificial limits placed on expert practitioners. Like my neurologist, my physical therapist can't determine the most appropriate treatment approach for my body that is experiencing all-over chronic pain and has the additional hurdle of hypermobility (since my body is like rubber, my joints are unstable, and results are slow to come). The insurance company practices medicine by proxy, overriding clinical judgment with arbitrary rules and leaving those of us impacted by those arbitrary limitations to get piecemeal care for complex, holistic needs.
The True Cost of Rationed Care
Last year alone, while preparing taxes, I discovered I'd spent over $10,000 out of pocket on medications, massages, acupuncture, and co-pays. Let that sink in: $10,000 of my own money, on top of insurance premiums, for care that should have been covered. All while minimizing my ability to work and earn, thanks in large part to the step therapy for migraines.
I'm not unique. The average U.S. adult with chronic illness spends $6,000–$12,000 annually out of pocket for medical care—and that doesn't include lost income from missed work, reduced hours, or career limitations. That is a huge increase compared to before I contracted COVID, and all of my ailments ramped up, requiring amplified treatment and limiting my abilities.
With proposed changes to Medicare, Social Security, and disability benefits under consideration, that $6,000–$12,000 annual burden could increase dramatically for the most vulnerable patients—those who can least afford to absorb additional healthcare costs. It is not hyperbole to say that cuts to programs and incentivizing additional programs like "step therapy" will cost some of us quality of life and others actual life.
The System Knows Better—And Chooses Profit
Here's what makes this particularly infuriating: Insurance companies understand holistic healing. They know what treatments are most effective. They actively choose to limit access to comprehensive care that could improve outcomes and reduce long-term costs.
For those who don't remember the pre-ACA era, there's another layer to consider: before 2014, insurance companies could simply deny coverage entirely to anyone with "pre-existing conditions"—which could included not just chronic migraines and fibromyalgia, but also absurd things like pregnancy, acne, seasonal allergies, and even surviving domestic violence or sexual assault. According to HHS analysis, 50 to 129 million (19 to 50 percent of) non-elderly Americans had some type of pre-existing health condition that could have been used to deny or limit coverage. I was denied insurance because of childhood asthma. People with fibro, EDS, and chronic migraines often couldn't get insurance at all, or faced astronomical premiums that made coverage impossible. With discussions about returning to that model, we could see a future where step therapy becomes the least of our worries—where having any chronic condition means having no insurance options whatsoever. I dearly hope we do not go back to those days.
Chronic illness exposes the fundamental absurdity of our healthcare system. Treating chronic conditions as if they're temporary is medically nonsensical. Recommending effective non-pharmaceutical treatments while refusing to cover them is diabolical. But let’s be honest, even if you aren’t chronically ill, you are still being impacted by the nonsensical loopholes of our medical system that prioritize profit over people.
The step therapy system isn't just inefficient—it's deliberately cruel. It transforms patients into unwilling test subjects for insurance company profit margins while forcing medical professionals to violate their oath to "first, do no harm." When companies prioritize cost savings over human suffering, they create conditions that can push vulnerable people toward desperation and hopelessness. Combine these practices with the inefficient systems and overloaded practitioners - quality, compassionate care is going to keep getting harder to find or deliver.
The mental health crisis among chronic illness patients isn't inevitable—it's a predictable outcome of systemic neglect and institutional gaslighting. Every day of unnecessary suffering imposed by step therapy protocols has real psychological consequences that extend far beyond physical symptoms.
We deserve better. Our doctors deserve better. And it's time we demanded a system that prioritizes healing over profit.
So, Why Does This Matter and What Can We Do?
Step therapy and arbitrary treatment limits aren't just bureaucratic annoyances—they're human rights violations harming millions of chronically ill Americans right now.
This shouldn’t matter to you just because you could be affected by this experience in your lifetime. You or someone you love is very likely to become one of the estimated 70% of adults who will require long-term care services, costing $40,000-$54,000 a year. You or someone you love could become one of the ~66.5% of Americans (550,000 people) who file for bankruptcy, citing medical bills as the primary cause. I believe this should matter to all of us because it is an inhumane and unjust system that is literally costing untold numbers of us quality of life and actual lives.
ADVOCATE: Contact your representatives about comprehensive insurance reform. Current proposed legislation like The Safe Step Act and similar state versions, are a first valiant attempt at reform, but many believe they don’t do enough to address the rising costs of medications, the administrative complexity, or the protocols requiring patients to undergo unnecessary treatments when there is a safer, more effective option.
Let your representatives know you want comprehensive reform of current restrictions
Get rid of step therapy
Eliminating visit caps on recommended treatments (acupuncture, PT, massage)
Protecting coverage for pre-existing conditions
Requiring insurers to cover treatments they acknowledge as beneficial
Address the profiteering inherent to pharmaceuticals in the U.S.A.
SUPPORT: The chronically ill people in your life are fighting invisible insurance battles daily. Offer practical help: drive them to appointments, help with appeals paperwork, offer to attend appointments as their advocate, fill in the gaps of “everyday chores”, or just listen without trying to "fix" it.
If you’re experiencing step therapy/fail first, an organization called “Let My Doctor Decide” has developed THIS PATIENT GUIDE.
I often recommend https://fighthealthinsurance.com/ to folks who have been denied aspects of treatment. (Thank you, Holden Karau and Professor Timbit)
RESEARCH: Know your rights and your plan's limitations before you need them:
What step therapy requirements exist for your conditions?
What treatments are recommended, but not covered?
Look at the universal healthcare systems of other countries and consider what that might look like in our country. Nothing is perfect, but we have many templates to learn from.
SHARE: If this resonates, share it. Insurance companies count on us staying quiet about their cruel practices. Your voice amplifies ours.
I’m not asking for special treatment—I’m asking for the treatments our doctors already know will work, without artificial barriers designed to protect profits over people. The system can change, but only if we demand it.
Stay tuned for my next article, where we’re gonna get into social ableism and toxic positivity.
Sources:
CDC | About Chronic Diseases
Associated Press | States confront medical debt that’s bankrupting millions
Healthcare Insights: How Medical Debt Is Crushing 100 Million Americans
ACMA: An Essential Guide to Step Therapy
NIH: Step Therapy’s Balancing Act — Protecting Patients while Addressing High Drug Prices