Ben's Story

My journey with Crohn’s disease, a type of inflammatory bowel disease (IBD), began 23 years earlier. At age 14, I was in and out of doctors’ offices for more than a year with no clear explanation for my stomach pains and weight loss. When I was finally diagnosed, I had surgery to repair damage the disease had caused and began steroid treatment to control the inflammation.

For two decades, I felt so lucky that I could control my Crohn’s with just exercise and diet. When my symptoms returned, my optimism about how far treatments had advanced since my initial diagnosis was tempered when my insurer wouldn’t approve my doctor’s recommended course of treatment. Instead, I had to take an older medication almost certain to fail, and only after proving failure could I get the treatment my doctor and I knew had the best chance of success. This insurance protocol is known as step therapy.

During the time it took to prove failure, I had to step back from the business I owned. I didn’t have the energy to run or ride my bike, and I couldn’t stop worrying about whether my disease was progressing and causing irreversible damage to my body. I was also acutely aware of the irony--the stress I couldn’t avoid or mitigate with exercise could actually worsen my symptoms.

After six months of pain, frustration, and a battery of not-so-pleasant tests, my doctor finally convinced my insurer that the course of steroids wasn’t working, and in fact the disease had shifted into a different part of the GI tract. After getting approval for the drug my doctor had initially recommended, I started the course of treatment, and my disease went into remission.

I will never know for sure if the disease progression I experienced during those six months could have been prevented. But I’m certain that the insurance-mandated step therapy caused an unfair and unnecessary physical and emotional burden. That’s why I’ve joined the Crohn’s & Colitis Foundation in raising awareness of the Connecticut-passed step therapy reform laws and calling for the U.S. Congress to pass step therapy reform, so that 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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