I recently read a story about a family who drove to Nevada from Florida, hoping to get home for Christmas. Their flights had been canceled several times, so instead of spending the holiday at home with family, they spent several days on the road. Unexpected airline issues thwarted their plans.

If approved for hemophilia A, the one-time gene therapy Roctavian (valoctocogene roxaparvovec) would provide substantial cost savings per patient compared with other preventive treatments, specifically Hemlibra. That’s according to a draft evidence report issued by pricing watchdog the Institute for Clinical and Economic Review (ICER). An independent non-profit…

Added to steroids, rituximab seems to be as safe and effective as cyclophosphamide therapy at controlling bleeds and wiping out antibodies against clotting factor VIII (FVIII) in adults with newly diagnosed acquired hemophilia A (AHA), according to a Phase 3 clinical trial. However, data from the CREHA…

Taking time off is critical for our mental health. Even if a vacation is a staycation, having time to relax and have fun is essential for our overall well-being. Rest and rejuvenation also help make us more productive. But vacations are a luxury. Traveling to Europe, cruising to Mexico, and…

It is hard for some of the people in my community to understand why my son Caeleb struggles when he walks. Many see him as a normal 14-year-old boy who towers over me and is as goofy as the next kid. But they didn’t see him when he needed…

Weekly and monthly treatment with Mim8, an investigational antibody therapy, was seen to be better than on-demand or standard preventive treatments at reducing bleeding episodes in patients with hemophilia A, regardless of inhibitor status, who took part in a clinical trial. Top-line results from the global Phase 3…

I walked into my home and heard my oldest son, Julian, having a heated conversation over the phone. He hung up and threw his phone down in absolute frustration. “What’s wrong?” I asked. He said, “How did you and Mom navigate hemophilia treatment with our health insurance company?…

I am a believer in the benefits of summer camp — hemophilia camp to be specific. Children with bleeding disorders across the U.S. have the opportunity to spend time away from home and participate in activities they may not usually experience. Hemophilia camp is a place where kids can…

I often get caught up thinking about things I did not do for my sons, who have hemophilia. I worry about the many deficiencies I have, and how they affect my sons’ lives. Dealing with a bleeding disorder is more than enough to worry about, but do they feel…

Not all medical visits are created equal. Sadly, or perhaps horrifyingly, some women must fight to get access to the most basic of care, while others are fortunate enough to access it easily. While this is reality, it is not OK. It is imperative for the health of…