Well after 4 1/2 months we FINALLY got started on the Radicava! But, the day before my wife's 1st infusion was to occur, Option Care tried an end run to cancel the order on both the medical and insurance parts. It was nothing but a small miracle that one of the Option Care employees was able to make it happen. It was very disheartening and cruel to receive those phone calls within about 45 minutes of each other to torpedo the infusion process. It really smacked of conspiracy and a deliberate attempt to derail the process.
That being said, at least my wife is now receiving to drug. We are obviously curious to see how she reacts to the Radicava. Not to be sour grapes (especially to those still waiting) about the process, but it would have been much more reassuring to have had this drug 3 or 4 months ago. My wife, like many others were left hanging in the wind waiting for this drug as their conditions worsened during the past few months.
In my wife's case, she has deteriorated significantly in all areas and who knows if it would have been delayed a bit with an earlier delivery of this drug. Mostly, it was the mental anguish that she suffered thinking that it would be the next week, then the next week, then the week after that and so on and so on. A horrible way to conduct medial treatments or perhaps better said as "mis-treatments."
I hope that all that are waiting for this drug get it sooner than later. I just wish that those insurers, reviewers and other administrators really get an understanding of how precious each day is for an ALS patient. Good luck to all and keep up the good fight. I'll report back and let you know how my wife is tolerating the infusions.
