Reply To: Problems with IVIG

Hi Jim, Thanks for your thorough explanation. No, the first link no longer works. And the link that does work goes straight to the Affordable Care Act (ACA) Private Insurance Tab.

It’s true that the folks I know about went to Chicago before the Affordable Care Act became law. However, the majority of the costs for HSCT, other than travel and lodging, are mostly Medicare Part A costs and are covered 100%.

The rest, if you only consider the original ‘retail’ price likely looks very high. A comparison. My friend, on Medicare, just went to the hospital for 2 days and had two stents put in. Total ‘retail’ charges $187,000. Medicare authorized all the charges and paid $11,000 leaving only the few days hospital out of pocket for the friend to pay. About $1,200.

I have read your postings and know you’ve done your homework. I’m happy the Rituxan is working for you and maybe you’ve won a remission reprieve.

For those still taking Rituxan and having problems, the HSCT is still an option, as you point out. And, if for some reason a reader is on disability and under age 65 (70 for Seattle) it behooves them to keep an open mind about using Medicare to have the HSCT.

At any rate, for other readers, do what Jim has done- always check with the providers. Request a Medicare payment determination. They may have alternative ways of helping out. For example, when I went to Cleveland Clinic Ohio they had a housing option available provided by volunteers who provided free rooms in their private homes.

I’m sure Paula at Northwestern has talked over all of this with you.

And, now back to the original poster and what can be done about Rituxan related illness and finding CIDP experts.