Inadequate access to treatment centers, lack of expert care, and high bleeding rates lead to similar joint complications in hemophilia patients with and without inhibitors, and joint problems in 70% of the people taking part in a recent study in five developing countries. The research, “HAEMOcare:…
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uniQure has treated the first patient in a Phase 2b dose-confirmation study of its investigational gene therapy, AMT-061, for people with severe and moderately severe hemophilia B. The trial is still recruiting participants. AMT-061 uses a viral vector, AAV5, to deliver the gene for a mutated clotting factor…
Health Canada has approved Hemlibra (emicizumab) as a treatment to prevent or reduce bleeding in Hemophilia A patients in Canada who have factor VIII inhibitors. Hemlibra is an antibody therapy designed to combine factors IX and X of the blood clotting series and promote clotting. Restoring the…
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Welcome to ‘Hemophilia and Me’
Welcome to “Hemophilia and Me.” Former Hemophilia News Today columnist Shellye Horowitz, who wrote “The Forgotten Factor,” inspired me to dust off my journalism degree and share my own story, and now I’m grateful and honored to join a team of inspirational rock star writers. I plan…
Imagine a bank account. When depositing money, the ideal is to have enough to cover expenses, bills, and some fun things. But when the withdrawals amount to more than the available money, there’s a crisis. At that point, using credit cards or applying for impossible-to-pay-back loans may become necessary. The…
For many years, those who suffered from hemophilia were told to not take part in any kind of physical exercise. It was only in the last 40 years or so that doctors started encouraging patients to choose a physical activity that’s both safe and enjoyable for each individual. Play safe…
Hemophilia patients may now benefit from financial assistance for out-of-pocket expenses, health insurance premiums, and incidental medical costs following the launch of a new program from The Assistance Fund (TAF). Founded in 2009, TAF is an independent nonprofit aimed at helping eligible patients and their families cover costs not…
I had a lot to learn about hemophilia when I attended my first retreat for women with bleeding disorders in 2017. Some of the attendees were comparing their levels of clotting factor VIII (FVIII), the protein that’s deficient in hemophilia A, when I was shocked to learn mine were the lowest…
Hemlibra (emicizumab-KXWH) is an antibody-based therapy used to prevent or reduce bleeds in hemophilia A patients, with or without factor VIII (FVIII) inhibitors. It is given as an under-the-skin, or subcutaneous, injection.
The Loma Linda University Health (LLUH) Hemophilia Treatment Center has become the first clinic in California offering Hympavzi (marstacimab) for people with hemophilia B. “For the first time, patients with hemophilia B in Southern California have access to a therapy that is not just effective, but also drastically…