Hi
I am new to this site as of today.

I would like to ask for a favor of any and everyone right off the bat, before I can do what I would like to do, which is read more about everyone else’s experiences with CIDP.

I have received my first three “induction” doses of IVIG, but got completely puzzled when told by the outpatient infusion department that “my” IVIG for the next two days of the five day starter tx, had been diverted to the ICU.
The chief pharmacist at the hospital told me the “allotment” of IVIG for the hospital had been used early in the month.

Of course I would want anyone in the ICU to get the IVIG first. Afterall, this is a triage situation.

Then I discovered doctors were putting their regular patients who had been getting infusions in the outpatient center, into the ICU, so their patients could get the IVIG because Medicare (?) wouldn’t pay for it otherwise.

That got me to looking up a whole lot about the access to IVIG news that has been going on that I new nothing about.

When I saw the bill for the IVIG treatment, I about stroked. The pharmacist confirmed it, but the IVIG actual cost got buried in the whole hospital bill (they had to cost shift in order to get paid).

I’ve gone through different sites to nail down on paper the cost of IVIG, per litre, for the stuff itself (like gammunex vs gamma guard and my company is changing me from the gamma guard to the gammunex).

Is their anyone who has a really good, self-explanatory bill, or website, or insurance company that can be called to get a printed, honest cost of a bag of this stuff?

When I tell people, like my disability carrier, they can’t believe $21,000 a litre and they certainly can’t believe that I’ve heard people tell me $26,000. They think I am telling them the whole cost of the RNs, the infusion chair hourly cost and perhaps the whole week’s worth of infusion.

I need it kind of soon due to a telephone SSA disability appt. on June 5.

Apologize for asking for a favor before being able to offer something first.

Promise to do so. Osler.:p

PS. My birthday is this week and don’t know much about (anything) blogs and web-sites, but if I don’t get this other disability (not SSA) filed by my birthday this week, the percentage I’ll get for life from this different disability policy will go down by a large amount, just due to being a year older. (Just like being one day late on a charge card payment!!!)