Any experience with insurance coverage for BMT treatment for VEXAS?

Posted by mashapiro @mashapiro, Jun 1 8:31am

Anyone have issues with health insurance company denying coverage for BMT relating to VEXAS?

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Hi @mashapiro, Wow, that has to be frustrating for you if there is a potential cure in sight for your condition and you’re denied coverage. From my understanding there are less risky treatments besides a BMT for VEXAS such as Janus kinase inhibitors, especially ruxolitinib.

If you have undergone prior treatments and they didn’t work leaving a BMT as your only option of a potential cure, then it may be helpful to have your doctor write a narrative to the insurance company. This may need a nudge from your medical team. Have you been tried other treatments and they weren’t successful?


I add my welcome, @mashapiro. I'm tagging fellow VEXAS members like @mayo2290 @rjmctavish @caithanrah, who might have experience with dealing with health insurance related to VEXAS.

You may also be interested in this related discussion:
- Has anyone heard of VEXAS?

I agree with @loribmt's suggestion of getting your care team involved. A social worker might be a good place to start. See this article to learn more about how social workers can help advocate for treatment access.
- – How an Oncology Social Worker Can Help

Might you have a member of your care team who could help?


Thanks for your suggestions. My husband is the one with VEXAS. My first thought was to reach out to our social worker. A BMT is not imminent so he has time to get this resolved.

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