Melissa's Story

I was 17 years old when I found I had Crohn’s disease. My senior year of high school was far from what I’d hoped: No varsity tennis, so much time in the hospital, and isolation from friends because I just couldn’t share what I was going through. It’s still painful to think about, and I can’t help but wonder how much better things might have been if insurance-mandated step therapy hadn’t delayed me accessing effective treatment.

By the time doctors figured out why I’d lost weight, was in pain, and had so little energy, my inflammatory bowel disease (IBD) was severe. My doctor wanted me to immediately start taking an aggressive biologic medication, but our insurer said that I had to conform to their step therapy protocol: I’d first have to try and fail on a medication they preferred. 

I was in and out of the hospital and, a month after my diagnosis, I had to have emergency surgery to remove a large portion of my intestines. During all this, my father and my doctor were pleading for insurance approval to start the more aggressive treatment. After a few weeks and countless phone calls, our insurer relented, but when that drug also proved ineffective, we had to fight for three more months before our insurer agreed to cover the next biologic. 

My doctor said that starting the first biologic he’d prescribed sooner wouldn’t have prevented surgery, but it could have been planned instead of being an emergency. I might not have lost so much of my intestines and needed an ostomy. That’s tough to think about, because as a teenager my ostomy made me so self-conscious about my body. I felt different, and so alone. 

I wanted to become a nurse but, in college, managing my disease and keeping up with the program’s demands proved too difficult. Today, I’m a pediatric medical assistant and, for the past two summers, I’ve found incredible joy working at Camp Oasis for children with IBD.

My journey hasn’t been easy, but I know it would have been even worse if my dad hadn’t been there to fight for me. Not every IBD patient has that kind of champion, and the truth is, it shouldn’t be necessary. 

That’s why I’m joining the Crohn’s & Colitis Foundation in raising awareness of the Wisconsin-passed step therapy reform laws and calling for the U.S. Congress to pass step therapy reform. I believe all patients with private insurance should have access to an expedient and medically reasonable appeals process.

Learn more at www.crohnscolitisfoundation.org/steptherapy.

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