When I was 14 years old, I was diagnosed with Rheumatoid Arthritis, a chronic autoimmune disease in which the immune system attacks the joints, organs, and tissues it’s meant to protect. That diagnosis marked the start of a lifelong battle not just against disease, but against a system designed to deny me the treatment I needed.
What followed was a painful and expensive journey. I endured over a dozen surgeries, multiple hospitalizations, and eventually a $100,000 jaw joint replacement, all because my insurance company would not let me take the medication my doctor prescribed initially.
Instead, I was forced through a process called step therapy, often referred to as “fail first.” That meant I had to try and fail multiple cheaper medications; ones my doctor knew would not work before being granted access to the treatment my condition required. There needs to be reform for patients to go around the “fail first” policy, so patients can access the medications their doctors prescribe to prevent more stories like mine.
Insurance companies claim step therapy saves money by ensuring patients try low-cost options first. In some cases, step therapy can improve cost-effective measures and offer benefits to specific groups of people. If a cheaper yet equally effective medication is available for a patient, step therapy is beneficial. But without a way to bypass the process for patients who have a medical necessity for specific drugs, it delays care, worsens conditions, and, for me, it led to irreversible damage. I was one of the youngest people in the U.S. to undergo a jaw joint replacement; an outcome that could have been avoided if insurers had listened to my doctor from the start.
And I’m not alone.
Autoimmune diseases like mine affect over 8% of the U.S. population and 2.4 million Texans. These diseases, such as lupus, multiple sclerosis, Crohn’s disease, and ulcerative colitis, each impact the body in complex, individualized ways. No two patients respond the same way. And why treatment plans must be tailored to each individual. There are over 140 different autoimmune diseases, 38 identified immune pathways, and over 30 different biologic medications designed to target specific inflammatory signals. What works for one patient may not work for another.
Yet insurance protocols often ignore this medical reality. Step therapy assumes that one-size-fits-all, even when science and doctors say otherwise. Physicians who are experts in their fields with years of experience treating medical conditions are often undermined by pharmacy benefit managers (PBMs) and insurance adjusters with no clinical expertise, relying instead on spreadsheets to identify cost-saving measures.
Even when providers have lab work, scans, and years of patient history clearly demonstrating a medication will not work, they are still forced to watch their patients “fail first.” In my case, it took failing six different medications, from methotrexate to Humira to Xeljanz, before I finally got what worked. By then, the damage was done. My eyes had irreversible damage, many joints were destroyed to the point of immobility, and the worst was my jaw joint had deteriorated beyond repair.
This is not just a patient issue—it’s also a cost issue. Insurers did not save money on my care; they spent far more on hospital stays, surgeries, and additional treatments to fix what delays in medical care caused.
To truly protect patients, we need step therapy rules that respect the complexity of autoimmune diseases and the knowledge of physicians. That means allowing patients to be exempt from step therapy when their doctor can show a drug is likely to be ineffective, dangerous, or has already failed. It means protecting patients who are stable on medication, so they are not forced to switch to satisfy an insurance requirement.
These reforms will not eliminate step therapy; they will make it safer, smarter, and better medicine. And most importantly, it would restore the doctor-patient relationship, remove the barriers, and let medical expertise, not profit margins, drive treatment.
I lived the cost of inaction. Let’s make sure no one else has to.
