By Sammantha Dorazio
Chronic diseases have a way of rewriting people’s life plans. Just consider my longtime dream of being a college athlete.
One day I was training for championships with my varsity swim team. The next thing you know, I’m being rushed to a hospital with chest pain and swollen joints. I wound up in a rheumatology clinic, where I was diagnosed with juvenile arthritis.
I wish I could say things looked up after my diagnosis. In reality, my life got worse just when it should have started getting better, at the moment my physician identified the medicine that would help me.
The medical team was confident about which medication would be most likely to help my pain — but it took four years before I could benefit from it. Four years. That’s because of a process called step therapy, where insurance companies block the medications that patients’ health care providers want to prescribe.
Step therapy is unfortunately common, a process where insurance companies require patients to use lower tier medications before advancing to the right medication for the patient. It is not based on medical science; this approach is used simply because it is cheaper for insurers.
In my case, it meant I had to take an immunosuppressant that my doctor did not prescribe and knew would not work. It did not help my symptoms or pain. Worse, it caused severe side effects dubbed by rheumatoid patients as a “methotrexate hangover.”
I couldn’t appease the insurance company by taking this medication for a few weeks. I had to take it for 16 weeks, which is a common therapeutic dose for more insurance companies. When that didn’t work, the insurance company told my doctor to up the dosage instead of allowing me to change to the medication that my doctor wanted to prescribe.
This process was entirely backward. Instead of my doctors determining my treatment plan, my insurance company was.
Step therapy sent my life into upheaval. I felt the same frustration as my doctor, whom I know and trust, as we proceeded to try a higher dose of a medication that we both know will not help. It is heartbreaking and scary. I even developed anxiety because I felt so out of control with what was going on.
Some years later, I see clearly that step therapy adds insult to injury by blocking medical professionals from actually treating their patients. While I may not have realized my dream of being a college athlete, I now seek to champion something else: step therapy reform.
As a patient advocate, I have shared my story with legislators in the hopes of passing legislation to limit step therapy. People with chronic diseases like rheumatoid arthritis have enough pain without having to endure the agony of delayed or ineffective treatments. I share my story in hopes that other patients can have a better chance of accessing a treatment plan prescribed by their doctors, not by their insurance company.
Sammantha Dorazio is pursuing a nursing degree. She has lived with rheumatoid arthritis since high school. Her experience as a patient led her to become a vocal patient advocate.
