The sound of a tape gun gives me anxiety. There’s the quick pull of the tape from the roll, followed by its crinkling as it’s pressed onto the box’s flaps. The serrated blade bites down and tears the tape cleanly, the cardboard often giving a faint, hollow thud beneath the…
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Second in a series. Read part one. In my last column, hemophilia awareness advocate Lee Hall shared memories of a childhood shaped by hospital stays, difficult infusions, and the early days of hemophilia treatment. For many readers, those experiences may already feel unimaginable compared with the care…
Magellan Rx Management, the pharmacy benefit management division of Magellan Health, recently shared results from the first six months of its hemophilia management program as it observed World Hemophilia Day April 17. The focus of the hemophilia management program is to reduce unnecessary costs while improving quality of care.
A recent study found that people with hemophilia who report better mental health may be more likely to adhere to their prophylactic treatment. It’s a compelling idea — that mental well-being can influence how consistently someone follows a care plan. But as I read through it, I couldn’t…
I do not like to tell people that my sons are hemophiliacs. It is not that I am blind to the reality that they have a bleeding disorder, but my boys are so much more than a diagnosis. Why address them as if they carry a title or wear a…
Parenting a child with hemophilia often means learning how to balance protection with independence — knowing you can’t prevent every bleed, but still wanting them to grow, explore, and feel like themselves.
Living with any chronic illness comes with a financial burden. Hemophilia, in particular, is extremely rare and extremely expensive. What follows is a summary of the expenses, insurance, and savings that I’ve encountered in my journey with bleeding disorders. Expenses Most years, I’m sure to hit the $7,000+…
The World Federation of Hemophilia (WFH) announced that Takeda has joined its WFH Humanitarian Aid Program, agreeing to large, annual donations of treatments for people with inherited bleeding disorders like hemophilia in developing countries. Takeda,…
Second in a series. Read part one. The birth of our oldest son, Julian, was a milestone event in our lives. After all the excitement and drama of that stormy June evening in 1996, things calmed down for the rest of the night. My wife, Cazandra, rested in her…