Robert's Story

It’s been 22 years since the summer I experienced prolonged diarrhea and nighttime trips to the bathroom. I had my first colonoscopy at age 33 and was diagnosed with Crohn’s disease shortly after. For the most part, I’ve been able to control the symptoms of my disease with the right medications. But getting and keeping the right medicines has been a battle against insurance-mandated step therapy, which isn’t therapeutic in the least.

When I was diagnosed with Crohn’s, a type of inflammatory bowel disease (IBD), my doctor prescribed a certain medication to keep symptoms under control. At first, my insurer refused to pay because a less-expensive medication was available. Fortunately, all it took was a phone call to establish that an unavoidable allergic reaction qualified as “failing first” on that drug, and I was allowed to start the treatment my doctor had recommended. This fail-first practice is what insurance companies call step therapy.

Two years ago, out of the blue, my doctor’s office informed me that my insurer had refused to renew coverage of the medicine I was taking. They said I had to try another drug and would only resume paying for the medication that had kept me in remission for two decades if I could prove their choice didn’t work. It took three weeks for my symptoms to get bad enough to prove the new medication had failed. Then, it took nearly three months to bring my symptoms back under control once I was allowed to return to my original medication. During that time, I regularly had to plan my day to be close to a bathroom. 

I was lucky that my original medication eventually worked after I resumed it. That’s not always the case with Crohn’s and colitis patients. IBD is chronic and progressive. If inflammation is under control, it’s common knowledge that you should keep doing what you’re doing. 

I believe what my insurer did was coercive. Being forced to give up an effective medication for one they wanted to try made me feel like a captive subject in a science experiment. No one should have to be turned into a guinea pig to get the treatment they need. 

Thanks to the right medication, I can live a more or less normal life—it seems cruel that an insurer would block someone from the treatment that allows them to do so. That’s why I am advocating alongside the Crohn’s & Colitis Foundation as they call on Massachusetts and federal legislators to pass step therapy reform, so all patients with private insurance have access to an expedient and medically reasonable appeals process. 

Learn more at www.crohnscolitisfoundation.org/steptherapy. 

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