Lori's Story

My first experience with an insurer’s fail first protocol was eighteen years ago. I began experiencing excruciating pain and high fevers, and was soon diagnosed with Crohn’s disease, a chronic, incurable inflammatory bowel disease (IBD). My case was severe, and my doctors thought a biologic medication was the most appropriate treatment, but they started me on a high dose of steroids because they knew my insurer would say I needed to try that first.

My pain and fever did not resolve, and my doctors fought for four months before my insurance company finally approved the medication I should have started from the beginning. By then, my disease had progressed, and it took nine months to get my Crohn’s under control with both the biologic and steroids. High doses of steroids caused kidney function issues, loss of bone density, significant weight gain, fatigue, and high blood pressure. I missed many days of work and  had no energy to see friends and family.  I had to give up my private pilot’s license and I could no longer honor volunteer commitments to the non-profit organizations that meant so much to me. I believe I wouldn’t have had to sacrifice so much if I had started the treatment my doctors knew was best right away.

Three times in the past eight years, I have had to fail a medication before moving onto the one my doctors felt was best for my particular diagnosis. Each delay has caused more damage to my body, and getting my disease under control has taken longer. Recently, after being stable for nearly two years, my insurer stopped covering my medication just because I changed employers. They had already put me through step therapy, and yet, I had to endure four stressful months worrying about whether I would have to miss a treatment while my doctors fought, and thankfully won, a lengthy appeals process.

Managing a chronic disease is hard enough. No one should suffer more because of insurance company protocols. That’s why I’m joining the Crohn’s & Colitis Foundation in raising awareness of the Colorado-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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