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Options exist even when hemophilia makes you feel trapped
It was a sunny, gorgeous day, and I was meeting a friend at one of the most beautiful places in California, where the Klamath River feeds into the Pacific Ocean. River otters and sea lions gather there to feed off salmon. Imagine our luck: The parking lot was open! We…
Beqvez (fidanacogene elaparvovec-dzkt) for hemophilia
Beqvez (fidanacogene elaparvovec-dzkt) was a gene therapy that was approved in the U.S. for the treatment of certain adults with moderate to severe hemophilia B. The one-time therapy, given via an into-the-vein or intravenous infusion, was marketed by Pfizer, who made the decision to halt its development and commercialization.
The power of movement in the context of hemophilia
While cleaning up recently, I found a physician-authored exercise guide from 2002 for Filipinos with hemophilia. It was fascinating to read, especially knowing that at the time, synthetic factor products were still scarce here in the Philippines. Treatment options were limited, and many people with hemophilia still relied…
NICE recommends Altuvoct as NHS treatment option for hemophilia A
The U.K.’s National Institute for Health and Care Excellence (NICE) has recommended Altuvoct (efanesoctocog alfa) be available through the National Health Service (NHS), England’s public healthcare system, as a treatment option to manage and prevent bleeds in people with severe hemophilia A, ages 2 and older. This decision…
Why I’m afraid of surgery as someone with hemophilia
Note: This column describes the author’s own experiences with surgical procedures. Not everyone will have the same response to these operations. Consult your doctor about the potential risks and benefits of any procedure you’re considering. As I get older, the thought of needing any kind of surgery scares the…
What it’s like managing hemophilia with an inhibitor, part 2
Second in a series. Read part one. A hemophilia inhibitor is like a firewall in a computer network. Clotting factor replacement therapy is supposed to enter the bloodstream and help form clots to stop bleeding, just as data should pass through a network without interruption. However, an inhibitor acts…
What’s next after Pfizer’s gene therapy for hemophilia B is halted?
Gene therapy has long been touted as a revolutionary hope for people with hemophilia B, promising a one-time treatment to drastically reduce — or even eliminate — the need for frequent infusions. Yet that hope has hit another roadblock. Pfizer announced last week that it’s halting development of…
Pfizer discontinues hemophilia B treatment Beqvez
Pfizer said it will stop development and commercialization of hemophilia B treatment Beqvez (fidanacogene elaparvovec-dzkt). “Pfizer has made the decision to cease further development and commercialization activities with respect to Beqvez for several reasons, including the limited interest patients and their doctors have demonstrated in hemophilia gene therapies…
My family is enjoying a respite from complications of hemophilia
Recently, my wife, Cazandra, and I entered an extraordinary time — when our adult sons are enjoying a period of peace with their bleeding disorders. Several months passed, and the only health issues that came into focus were dental surgery for Julian, our oldest, and some minor discomfort for…