A 70-year-old man with severe hemophilia A was treated for COVID-19 while receiving prophylactic, or preventive, treatment with Hemlibra (emicizumab) to lower his bleeding risk. This case underscores the importance of close cooperation…

Researchers from the PharmedOut project at Georgetown University Medical Center analyzed how pharmaceuticals market directly to people with hemophilia and found that, while strategies are effective, further regulation and studies are necessary. The study, “Direct-to-consumer Marketing to People with Hemophilia,” was published in the PLOS Medicine Policy Forum.  PharmedOut involves doctors,…

I recently came across a social media post that hit home. It began: “Never judge someone with a chronic illness if they …” and went on to list things like skipping meds, eating foods that might trigger symptoms, resting all day, or even doing something that looks “wrong”…

A few weeks ago, my oldest son, Julian, called me from the Blue Ridge Mountains in North Carolina and informed me that he had throbbing pain in one of his teeth. He immediately went to a nearby dentist and got news he didn’t want to hear: The tooth…

In a Phase 1/2 dose-finding study called B-AMAZE, FLT180a gene therapy from Freeline Therapeutics brought about sustained levels of factor IX, the clotting factor that is missing in people with hemophilia B, and this translated into fewer bleeds each year. Levels of factor IX within the normal range…

On May 18, Roger Ailes, the former CEO of Fox News passed away at his home in Florida after suffering a fall. The 77-year-old was diagnosed with hemophilia at the age of two, after he fell, bit his tongue and couldn’t stop bleeding. MORE: Six self-care tips for people living with…

CSL Behring has issued a voluntary, pharmacy level recall covering one batch of Mononine, its long-standing treatment for preventing and controlling bleedings in people with hemophilia B that is soon to be discontinued. According to the company’s statement, the recall is a precautionary measure due to…

My biggest fear for my sons, who live with severe hemophilia, is an auto accident. When my oldest son, Julian, began to drive, I impressed upon him anew the importance of wearing a MedicAlert emblem. He wore it like dog tags for years when he was younger,…

Although moderate to severe hemophilia patients are generally protected against the development of cardiovascular disease, cardiovascular-related events can still occur in this patient population, a study reports. These findings suggest that efforts should be made to prevent cardiovascular disease in hemophilia patients who have risk factors associated with the…

I love sitting by a campfire. Stories and laughter are shared, s’mores and hot dogs are roasted, and memories are made. Tending the fire to keep the flames burning requires constant attention, and it takes my mind off my troubles. Watching the flames leap and dance is mesmerizing. However, the…