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Living with Polyneuropathy CIDP, GBS, & CMT

Cost of IVIG


#21

Ssandra,

I too am on Medicare[original] and was slated for home infusion [for CIDP], which as you indicate falls under Plan D prescription. I held off treatment for a month to get a supplemental plan. My plan D would have covered the nurse part as a courtesy but i would have had a 35% co-pay. I never asked what that would be because of other issues with coverage that had to be resolved before scheduling home infusion. I had recently joined Medicare and dropped my private plan since i was paying all of the premium and Medicare had me as still have a primary private plan. Anyway I finally got it all straightened out and don’t have any out of pocket at this time. I get Gamumex-C infusion every 3 weeks from a local infusion center here in the Dallas/Fort Worth area of Texas. I’m fortunate in that they carry all the brands of immunoglobulin. I’m surprised there is not an infusion center near you that will order Gamumex-C. I will be moving to another state in a year or so so I better check out my options in the town i am going to. I hope you can find a way to move to infusion center so you don’t have that added expense as you learn to deal with this crappy disease.


#22

Seenie,
Thank you. Yes, Nefesh B’Nefesh is an incredible organization. My daughter is hesitant to discuss this with them, because she would like to start “fresh” and not have anyone know about her health issues. But she may have to…


#23

Ah, OK, I understand. I can imagine why she’d be hesitant.

Seenie


#24

Like Kim, I’m in Australia. I’ve had Octogram, Kiovig & Privigen. As long as my Neuro feels that the infusions are assisting (which they are), I keep getting it (free). Additionally my medical insurance company (BUPA) pay for it to infused into me. When I queried them about how long they would continue to pay for the infusions, they advised “for as long as a medical specialist feels you need it”. I receive the infusions every four weeks.