Sticking with IVIG

[Guest guest]

Well, we thought we were going to start with IVIG and then move on to

Hizentra sub-q, but we have elected to stick with the hospital based

infusions for now. I've spent the past few weeks trying to get things set up

to do the sub-q and it's been a total pain in the rear. We have some changes

to our insurance coming as of Jan 1 and the Hizentra will switch from our

medical plan to our Rx plan. Welll, that means it will cost us more. Even

this year, all drugs that go through specialty pharmacy (including equipment

needed to do the infusion) must be paid out of pocket and then reimbursed by

the insurance. The estimate for us to pay out of pocket each month was

approx $7000+. The insurance rep said we'd be reimbursed within a month, but

then of course I'd have to buy the next round etc. Not happening. If we

stick with hospital infusions we have a $1500 cap for the whole year and

then the rest is covered at 100%. Plus, he is tolerating the gammaguard

really well with pretty much zero issues so at this point I'm feeling like

we should just leave well enough alone. I'm under a great deal of stress

right now as well and it was starting to stress me out that I was going to

be the one respsonsible for doing his infusions at home. Add to that the

head of one of our major home health agencies stated to me that they don't

even do sub-q and haven't ever used Hizentra and I was a bit worried about

really having enough support to get this started.

So, that's where we are at! I'm curious if those of you on sub-q have to

pre-fund your drugs and supplies as well?

Mom to Caelan 11