Bernard Slater Jr.: Hope on the Horizon as Hemophilia B Treatment Continues to Evolve
Bernard Slater Jr., Business and Community Liaison at Charleston Job Corps Center, shared on LinkedIn:
”Yesterday I had an appointment with my hematologist, Dr. Merrill, to discuss my Hemophilia B, recent injuries, and some of the newer treatment options that are becoming available.
We spent quite a bit of time talking about gene therapy, specifically Hemgenix.
While it doesn’t appear that I would currently qualify for gene therapy, and insurance would likely not approve it in my case, I appreciated having an honest conversation about where things stand and what options may be available in the future.
One thing my doctor was concerned about was the number of falls and injuries I’ve experienced over the past year.
Between a broken rib (3-legged race w Preston), a tailbone injury(slipped on ice and fell down the stairs), and my recent hip hematoma, he wanted to take a closer look and ordered additional testing and blood work.
The encouraging news is that there are still new treatment options available.
For now, I will continue on Alprolix, and my doctor is seeking insurance approval for Hympavzi, a once-weekly injection for people with Hemophilia B.
If approved, it could help provide additional protection and reduce bleeding episodes.
If it’s not approved by my insurance , the we’ll explore other options like regular prophylactic treatments.
Living with a bleeding disorder often means adapting to setbacks, adjusting plans and schedules, and learning about new therapies as they become available.
While yesterday didn’t bring all the answers I was hoping for, it did give me a clearer path forward.
I’m grateful for the advances being made in hemophilia care and for the medical professionals who continue working to improve the quality of life for people like us.”
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