Jay's Story

I was just 10 years old when I began experiencing terrible stomach pains and was eventually diagnosed with Crohn’s disease, a type of inflammatory bowel disease (IBD). Back then, steroids were the only effective treatment option available. They’d work for short periods, but then the disease would flare up, and I’d experience severe pain, fatigue, diarrhea, and weight loss from the inflammation.

I was in college when I received my first biologic treatment. I felt so much better just hours after the first injection. I was relieved to find a medication that worked, but the years of inflammation had taken a toll on my body. Several years later, when I was in law school, I stopped responding to my medication. I couldn’t eat and was bent over with pain, and the only way to control the symptoms and restore my quality of life was to undergo surgery to remove two-thirds of my colon. I often wonder if I might have avoided surgery if biologic treatments had been available during my childhood.

Last year, just after my wife had lost her job, we received an unexpected $7,000 bill for my biologic medication. I was shocked, stressed out, and certain there must be some mistake. The insurer pointed to the new copay accumulator program that had been added to our policy. To me, it was double-dipping. The insurer had collected every penny available from the copay card – far more than the amount of our out-of-pocket maximum – and now they wanted even more cash from me. How could that be right? I spent hours on the phone hoping for an answer and a solution but unfortunately, I learned that copay accumulator programs are common, and legal.

I am grateful that we had enough savings to pay that bill, but why should I be forced to drain my family’s emergency fund when the copay assistance program is intended to avoid precisely that outcome? It makes me even angrier when I think about the many IBD patients who are forced to stop taking the medication that effectively manages their disease because they can no longer afford it. That’s not acceptable, and that is why I’ve joined the Crohn’s & Colitis Foundation as they call on New York and federal legislators to enact safeguards that prevent copay accumulator programs from compromising patient health.

Join us in advocating for patient access to care by visiting crohnscolitisfoundation.org/advocacy.

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