Our Stories

I treasure every month that my treatment works to keep my Crohn’s disease symptoms at bay, because my body produces antibodies that eventually render medications ineffective. I was beyond upset when, recently, my insurer stopped covering the effective medication I was taking, even though I had already tried and failed another medication they insisted I take first – a process known as step therapy, or fail first.

My 27-year journey with Crohn’s disease hasn’t been easy, but I manage my symptoms with an advanced medication. The drug manufacturer provides a copay card which has helped cover the high out-of-pocket cost. But now, our insurer won’t count this copay assistance toward our high annual deductible because our new policy has a copay accumulator program. I’m angry at the choices we must make to pay for my medication. For many other IBD patients, the only choice they have is to abandon the medication they depend on.

As a gastroenterologist, my patients do not often die because of the reason they came to see me. And if they do, it usually is not from inflammatory bowel disease (IBD), so Carol’s death hit me hard. Her death was preventable, and it motivated me to become an advocate for Medicare reform.

I was two years old when I was diagnosed with ulcerative colitis, a chronic, incurable inflammatory bowel disease (IBD). My childhood wasn’t exactly “normal”, but I managed okay until my symptoms flared in high school. The pain was horrible, but things got even worse when I couldn’t take the medication my doctor believed had the best chance of helping. I needed to try and fail another medication first — a practice known as step therapy.

I was cooking dinner for my pregnant wife when I started to feel progressively light-headed. I told my wife that we should go to urgent care, then collapsed on the kitchen floor. As I regained consciousness, I knew immediately that my Crohn’s disease was back. As a dad-to-be, my initial thought was, “I’m about to have a baby – I need to get better now!” But I didn’t get better quickly, because ultimately insurance-mandated step therapy stood in my way.

Like many inflammatory bowel disease (IBD) patients, my life has been like a roller coaster ride. I am grateful to have a loving, calm husband who has helped me roll with the downs and embrace the ups. Rolling with it got a lot harder recently when my insurer said they would not pay for the medication that was working for me unless I tried and failed on one of their recommended treatments first, a process they call step therapy.

I was looking forward to the challenge and excitement of starting medical school in a new city. But soon after I arrived in Atlanta, my insurer said they would no longer pay for the oral drug that kept my ulcerative colitis under control. Instead of attending lectures and making new friends, I spent the first year of med school isolated and in pain, trying and failing medications that my insurer insisted I take first — a process called step therapy.

When Ethan was nine years old, he lost 15 pounds in two weeks. He was in excruciating pain and couldn’t keep any food down. I felt so frustrated and angry that we didn’t know what was wrong and I couldn’t help him. When Ethan was finally diagnosed with Crohn’s disease, I thought things would get better. But instead, insurance-mandated step therapy prevented Ethan from getting the treatment that could ease his suffering.

When he was nine years old, Chad experienced horrible symptoms that led to his hospitalization and a diagnosis of ulcerative colitis. The experience was traumatic, isolating, and made Chad feel lonely. But through Camp Oasis, our co-ed residential camp exclusively for kids with IBD, he found himself in the one place where other kids understood his struggle. When his mom picked him up, she found Chad in tears, because he was so sad to leave. Your ongoing support will help other kids like Chad have great experiences at Camp Oasis.

Ayla is one of the youngest patients we’ve ever seen. Her parents needed to change her diaper at least 15 times a day when she was only three months old. Early in her life, she could only consume her food through a tube in her stomach and had to visit the hospital every seven weeks to have an IV infusion. But thanks to your support, today she is 10 years old, and her disease is largely in remission. Instead of spending time in the hospital, she loves to dance. “It makes me so happy,” she told us. “And it allows my mind to go somewhere else when things have been stressful.”