You're making things happen! A reporter started working on a story about this situation last week and it should be coming out soon.

In the meantime, I've had several communications with BCBST, including an explanation that our denials over the last 16 months were a result of "human error" regarding our records in the system. Since the denials were for reasons clearly defined under their (wrong) policy, I'm not sure that is accurate. Also, they've now changed their Idursulfase policy, apparently in response to my post and the upcoming article, but with little improvement and no change in how it actually applies to Case.

If the goal is to bring their policy in line with the standard of care, I'm not sure why they'd change it without the benefit of experts, insert even more confusion into the policy itself, other than to get a handle on this from a PR perspective?

More details to come....