The European Commission has granted conditional marketing authorization to BioMarin’s one-time gene therapy Roctavian (valoctocogene roxaparvovec) as a treatment for adults with severe hemophilia A who have neither inhibitors nor detectable antibodies against adeno-associated virus serotype 5 (AAV5). The decision, which comes a couple of months after a…

One recent evening, my wife and I watched our favorite television shows. After the last one ended, the local news came on to give us the latest updates on the day’s top stories. One segment touched me deeply, and I couldn’t help but think back on the many health difficulties…

There’s often a children’s time at church when the kids race up to the front and sit with the pastor, where a message is geared to the children. When my husband leads this moment during worship, he asks questions and even takes the kids on “field trips” around the sanctuary.

As my husband, Jared, and I grow deeper in our marriage, the reality that we will spend our entire lives with chronic illness becomes increasingly clear. Jared has severe hemophilia B and a seizure disorder, which I learned about when we started dating. Meanwhile, I was diagnosed with…

Treatment with Hemlibra (emicizumab) improved joint health in people with hemophilia A participating in the Phase 3 HAVEN 3 trial, with the most pronounced improvements seen in those younger than 40 or in patients who had joints with frequent bleeds. Findings were detailed in the study “…

The pandemic changed the world. From working in an office to working remotely, staying connected through technology, and shopping for necessities online, the world managed to keep moving. I’m grateful for the conveniences and adaptations that are now the norm, but I find there’s still an area where many are…

Older men with hemophilia report higher rates of anxiety, depression, and diabetes compared with the general U.S. population, a recent study reported. However, rates of heart-related health problems, such as myocardial infarction (heart attack) and coronary heart disease, were lower in hemophilia patients than in the general population. The…

As I write this, I’m battling my first major cough and cold since the COVID-19 pandemic started. Regular mask-wearing seems to have lowered our chances of getting sick, which is good. But now I’m no longer used to feeling ill. At the same time, my husband, Jared, is bedridden…

Switching to Hemlibra (emicizumab) can add more than $100,000 a year to healthcare costs for people with hemophilia A in the U.S. who were previously using preventive replacement therapies, according to a new analysis. “Increased use of [Hemlibra] may cause an increase in economic burden for payers without…

The age of 18 is when teens legally move from minor to adult status, becoming able to vote in the U.S. It’s also when kids graduate from high school and move on to the workforce or college. For me, 18 was not a milestone. It simply meant I was going…