Amber & Ethan Downs' Story

We first took Ethan to the doctor when we noticed his legs were deep scarlet from ankles to shins, as if he had broken bones. An X-ray confirmed nothing was broken, but the doctor didn’t have any answers. Then, Ethan started vomiting. He couldn’t keep anything down, and soon he weighed about the same as his five-year-old brother. As I drew him a bath one morning, I saw his bones protruding out from his body, and my heart sank. Maybe Ethan saw how scared I was, because he asked me if he was going to die. I’ve never felt so scared and helpless.

We drove Ethan straight back to his doctor and demanded a blood test. Thankfully, the gastroenterologist on call ordered a colonoscopy, and we finally had an answer: Ethan was diagnosed with Crohn’s disease, a chronic, incurable inflammatory bowel disease (IBD). Ethan’s doctor put him on a liquid-only diet, and steroids to control the inflammation, but Ethan didn’t get better. Our doctor wanted to start a biologic treatment that he felt had the best chance of managing Ethan’s symptoms, but our insurance company wouldn’t pay for it unless Ethan tried and failed on an insurance-preferred medication first – a protocol called step therapy.

Ethan was too weak to leave the hospital. He came frighteningly close to dying when an ulcer ruptured, requiring emergency surgery and two blood transfusions. Finally, after two months of sheer agony, our doctor was able to begin the treatment he thought would work. Watching our little boy get the injection was hard but, within 10 minutes, Ethan felt better. His inflammation subsided and he was finally able to come home. We’ll never know whether starting this medication sooner could have prevented Ethan’s ruptured ulcer, but I do know that step therapy should never get in the way of treatment that can stop a child’s suffering.

Ethan is 14 years old now. He still struggles with his weight, but he’s able to attend school, he enjoys time with his friends, and he’s starting to play sports again. Every day Ethan shows me what it means to be a fighter! Now we’re fighting together, advocating alongside the Crohn’s & Colitis Foundation as they call on Alaska 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. 

Download a printer-friendly version of the Downs' Story