One morning in March of 2015, Justin, at the young age of 28, awoke fighting to catch his breath. Since he stopped playing sports over 10 years ago, he had been feeling weaker and now even walking to the mailbox was an over exertion. But today he struggled to move at all and his heart was pounding fast and hard. Determined to make it to work, he rolled himself out of bed and slowly made it to his feet, but his body had other plans. On his way to the bathroom, Justin fainted, collapsing onto the floor. When he came to, scared and out of sorts, he knew he needed emergency medical attention. At the hospital a team of specialists ran a number of tests and scans. After a number of hours, it was determined that Justin an autoimmune disease that needed the attention of a rheumatologist.
"You came at the perfect time,” said the rheumatologist at Justin’s initial visit. Justin’s blood test showed his creatinine kinase level was an astonishing 6,752 units per liter. (The normal level for this muscle enzyme is between 22 and 198 units per liter). This test result tied with his exam, led to Justin’s diagnosis of necrotizing autoimmune myopathy (NAM), a rare form of idiopathic inflammatory myopathy, or muscle malfunction, for which there is no treatment or cure. Immediately, Justin’s rheumatologist wanted to prescribe Rituximab, a biologic infused specialty cancer drug made by Genentech. Unfortunately, this miracle drug was not easy to access given the Step Therapy policies put into place by Justin’s health insurance company. “Get ready for a fight,” he told Justin and his mother. As they sought affordable access to this medication, Justin’s rheumatologist’s only option was to try to reduce the inflammation with prednisone. In addition to 7 other medications, Justin was initially prescribed a large dose (40 mg) of prednisone that, over time, was stepped up to 60 mg daily.
Unfortunately, the prednisone had not made much of a difference. Every morning Justin struggled to get out of bed, swallow the 8 pills that he was prescribed (an act that took a lot of effort and concentration given his weak esophageal muscles), and make it to work by 8AM. He wouldn’t feel “alive” until 1PM in the afternoon. He was also plagued by acne and numbness in his fingers and toes; two common side effects of prednisone.
Worse of all, Justin could not keep up with is friends. He was physically weak all the time, a condition that ultimately strained his relationships and led him to severe depression; another known side effect of prednisone. All the while Justin’s mother, Gabrielle, was doing everything in her power to secure access to the Rituximab. “I was determined to get him this drug. I would pray so hard every day and call everyone I could to get him access.” It wasn’t until Justin was readmitted to the hospital due to shortness of breath and diagnosed with prednisone-induced “athletic heart syndrome” palpations that his insurance company became responsive. At this time, Justin was regularly seeing an internist, a rheumatologist, cardiologist, gastroenterologist, and a therapist.
Following his second hospitalization, the insurance company approved his access to Rituximab. Justin received 2 infusions within 2 weeks and immediately began gaining weight. He was soon able to work out and take the supplements he needed to build muscle. His creatinine kinase levels dropped to the 700s and he was told that his NAM was in remission.