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Hemophilia A patients rack up high hospital bills, driving costs for the healthcare system higher, a study from Canada showed. “This study confirms that even with improved [treatment to reduce bleeding], hemophilia A has a non-negligible impact on healthcare system costs,” researchers wrote in the study, “Population-Le
More than half of people with hemophilia receiving prophylactic (preventive) factor replacement therapies at two treatment centers in Brazil did not collect enough medication to follow their prescribed treatment regimen, a real-world study has found. This gap between “prescription and practice” was evident even though
I’ve realized that one of the greatest challenges of parenting is teaching children how to care for others without making them feel responsible for everyone’s well-being. This is especially complicated when one parent lives with a disability or chronic illness. My husband, Jared, has severe hemophilia B and epilepsy. O
For more than nine years, I’ve shared my experiences raising two sons with hemophilia through hundreds of columns, articles, and videos. Sept. 30 will be my last column, and these last few pieces capture what matters most to me. I’m excited for what comes next in my writing journey. It’s important to make time for […]
When my oldest son, Julian, was 6, he started a ritual whenever I traveled away from home: He selected a small stuffed animal from his collection and placed it in my suitcase. When I asked why he had given me the toy, he responded, “Because I don’t want you to be lonely while you are […] The post My son’s small gift pr
Three years. That’s how long I put off a colonoscopy I’d been told not to put off. This wasn’t a first screening I could shrug off. At my previous colonoscopy, doctors found and removed a precancerous polyp. The instruction was simple: Come back in five years for a follow-up. And I knew what was at […] The post Delayin
Heavy periods in teenage girls should prompt further evaluation for an underlying bleeding disorder, such as hemophilia, rather than simply being considered a normal part of adolescence, according to a call to action from an international group of experts. Heavy menstrual bleeding, or HMB, can sometimes be the first —
Alvotech and Lotus Pharmaceutical are teaming up on plans to commercialize AVT87, a proposed biosimilar to Hemlibra (emicizumab). Lisa Graver, CEO of Alvotech, said in a company press release that the companies “look forward to working together” to broaden access to high-quality biologics. Hemlibra is an antibody-based
A branch of the European Medicines Agency (EMA) has recommended that the experimental therapy denecimig be approved to treat adults and children with hemophilia A, with or without inhibitors. The recommendation from the EMA’s Committee for Medicinal Products for Human Use (CHMP) will be reviewed by the European Commiss
I never saw myself as an athlete. In middle school, I played volleyball, sat on the bench for most of basketball season, and played softball in the summer. As an adult, I tried Curves, Jazzercise, some yoga, and went to the gym. Then, in 2016, I made a choice that changed my life. I was […] The post The risks of compar
Here is something many people do not know about me: I spent a year studying industrial pharmacy. I don’t always think to mention it. After all, I never earned the degree. I had attended a science high school, so pursuing a science degree at university felt like the natural next step. I chose industrial pharmacy […] The
When I was diagnosed with hemophilia decades ago, I was 10 years old, and nobody asked me what I wanted. That isn’t a complaint about my doctors. There was nothing to ask. There was hemophilia B and von Willebrand disease, and one way to treat them. You took what existed or you bled. For most […] The post Hemophilia’s
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