Katie's Story

At an appointment with a rheumatologist at age 17, I was told I would likely not live long enough to see my 21st birthday – my body was slowly shutting down from years with an autoimmune disease. It was more than the arthritis and psoriasis. The autoimmune disease had started to affect my digestive system, bladder, liver, kidneys, heart, and lungs.

My doctors prescribed a treatment regimen that was the best of what was available at the time. This allowed me to live past my prognosis, but it did not put me in control of my disease. My medical team had prescribed countless drugs, and I even participated in 3 experimental drugs protocols at NIH.

Later that year, in 2002, a biologic drug, was made available through a study at NIH. Within 3 weeks, I was out of a wheelchair, and within 6 weeks was walking unassisted. My psoriasis went from 80% body coverage to less than 5% body coverage within 8 weeks.

It was my miracle drug. It literally saved my life. I was able to join the workforce again and go on to have a very successful professional career. Little did I know then that all the progress that I made would be thwarted years later by step therapy.

I had been stable on my biologic treatment for years, with coverage for my biologic through my employers’ private insurance. In the middle of a plan year, my insurer sent me a letter informing me my biologic injections would no longer be covered under my plan until I went through “step therapy protocols”. They told me that I would have to try and fail a less-costly alternative treatment before they would to cover my biologic.

My insurer’s decision to force me through burdensome step therapy protocols not only interrupted my life, but it brought my life to a standstill. This step therapy decision was overly burdensome in three major ways:

1. The process was not transparent — there were no stipulations on how long I would have to try and fail to be on any particular step medication.
2. My doctors did not have any power to appeal or override the decision – my doctors tried to fight and help appeal the insurance decision to no avail.
3. My health plan did not take my medical history or my doctor’s medical opinion into account – it didn’t matter than my biologic was helping to control both my arthritis and my comorbidities like psoriasis and Chron’s disease, my insurer still wanted to try the lower cost alternative.

Within 4 weeks of going off treatment, I was back in a wheelchair – that’s just four weeks to go from a fully functioning active adult to wheelchair. That’s how fast this disease can progress if not stabilized. Unfortunately, I was forced to continue this step therapy journey for ten months – leading to 14 surgeries, countless doctors visits, missed time from work, and ultimately health care costs that far exceeded the price of my biologic treatment.

In 2021, Congress re-introduced federal legislation called the Safe Step Act (S. 464 & H.R. 2163)  that will reform step therapy protocols nationwide. The three reforms proposed in the legislation will make step therapy a more transparent process, that gives doctors the power to override step therapy decisions when medically appropriate, and that takes into account personal medical history. Had this bill been law in 2008, I would have had the power to avoid the burdensome step therapy protocols I encountered.

I need your help in teaching Congress about the importance of step therapy reform, and calling on our legislators to sponsor this important piece of legislation. Take five minutes to send your Member of Congress your support.