A troubled teen and the complex world of managed care

Key Points

This is a true story, but the names and a few minor details have been changed in deference to HIPAA.

I first met Bobby in 2002, when he was 8. His quality of life had been marred by severe eczema since infancy, but things got worse when he was diagnosed with asthma at age 6 and insulin-dependent diabetes a year later. Multiple courses of prednisone for his skin and breathing only complicated the situation. Luckily, his father was a union factory worker with excellent medical insurance.

Continuing troubles

During the next year, I did my best to traverse the nonevidence-based, expensive waters of treating a child with severe eczema. In Bobby's case, the problem was all the more complicated by his comorbidities.

Despite my high hopes, Bobby was one of the first kids who demonstrated that eczema worsens on etanercept (Enbrel, Amgen-Pfizer). A short time later, he developed the bald patches of alopecia areata, which quickly coalesced to totalis.

At that point, I was participating in a clinical trial of efalizumab (formerly Raptiva) for alopecia areata, and Bobby's father's insurance approved off-label use of the biologic, which changed Bobby's life. His skin cleared, his hair grew back and his asthma subsided.

For two years, Bobby was able to focus on taking care of his diabetes and being an otherwise-normal kid. I saw him every six months. It was a miracle. I published Bobby's case, with the happy ending, in the Archives of Dermatology. Not long after, however, the pediatric hematologist at my hospital called to say Bobby had developed autoimmune thrombocytopenia.

Of course, we had to stop the Raptiva, but the monthly IVIG infusions he received to restore his platelet count compounded his skin disease. Meanwhile, his asthma kicked in.

At that time, Bobby's father's excellent union health insurance was willing to cover the cost of bimonthly omalizumab (Xolair, Genentech-Novartis) injections, which he got from a private allergist. Whether it was the lingering effects of IVIG or the Xolair or both, Bobby won another year of eczema relief and alopecia areata remission.