Several of my recent columns centered on my frustration with hemophilia entering my sons’ lives at the most unexpected times. I wrote about some extraordinary moments we shared that, in the twinkling of an eye, were interrupted by an unforeseen health complication. A sense of failure would…
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One fall evening in 1998, I looked around my dining room table in Houston and saw the faces of men and women who’d become some of my dearest friends over the past year. Laughter flooded the room as we stood in awe at what we’d accomplished. I stood, raised a…
Prime Therapeutics and Takeda will work together to establish the value of Advate, relative to its costs and benefits, as a treatment for hemophilia A. According to Prime, work comparing factors like total health care costs and emergency hospital visits allow the company to better evaluate and distinguish…
Stephanie was my foster child in the ’90s. She was the cutest little girl on the planet. With curly, bright-red hair and freckles, she had a charisma and charm that were hard to ignore. Stephanie was born with HIV, the virus that causes AIDS. She developed full-blown AIDS when she…
A combination of drugs acting on different points of the pain pathway may be beneficial in reducing joint pain in people with hemophilia, according to a review article published in the journal Blood Coagulation and Fibrinolysis.
Healthcare costs can be 25 times higher for hemophilia B patients than for individuals who do not have a bleeding disorder, according to a recent study. These findings reflect both direct costs of hemophilia treatment and a greater need for other healthcare resources, researchers noted. The study, “…
When someone has a hemophilia diagnosis, they receive treatment in one of two ways: on demand, in which they are given products to help their blood clot after an injury or before a scheduled medical procedure; or prophylaxis, which…
Gene therapy directly addresses hemophilia B’s underlying cause by providing a healthy version of the F9 gene. In this way, it is expected to offer lasting bleed control with minimal or possibly no need for regular preventive therapies.
I live in what’s considered the high desert. At over 4,000 feet above sea level, my community experiences cold winters and hot summers. When the monsoon season brings rain, however, the desert transforms from a dry, brown landscape to one rich with green and flowering cacti. The one unfortunate part…