Reply To: Problems with IVIG

February 20, 2016 at 6:57 pm

Thanks for the advice JK!

With gratitude to Rituxan treatments, my CIDP is presently in recession. I don’t need to make myself as sick as a dog for 3-4 months in order to get the experimental HSCT that may or may not offer me additional benefits. It certainly offers me no benefits financially.

I’ve spent a large number of hours corresponding and talking to Dr Burt’s admin (Gozdziak), Dr George’s admin (McLaughlin), a face to face discussion with Dr Lewis about HSCT, and many more hours reading though and researching what Medicare will and will not cover.

Medicare section 2709 “COVERAGE FOR INDIVIDUALS PARTICIPATING IN APPROVED CLINICAL TRIALS” see went into affect 1/1/14. However, not all Medicare is alike! There are Medicare Advantage plans, HMO’s, PPO’s, and an array of Supplement plans. Most require a justification of medical necessity where you must have a life threatening condition in order to be considered for coverage. Most of the time you will be denied coverage and have to go thru the appeal process. Been there, done that…it’s not fun and took me almost a year before I had success getting reimbursement for a power wheelchair!

Medicare will not cover HSCT related costs for housing, food, supplies, most transportation (interstate and local), and caregivers. My uncovered HSCT costs would exceed $150K if Medicare were to cover the typical 80% of the total medical. Crowd funding isn’t as viable an option as it was when it first came on the scene (too many frauds looking for a fast buck these days). If you work for a government agency (as Alice Dicroce did at the time of her HSCT), you can get almost all the HSCT related costs covered.

My age disqualified me from Dr Burt’s program in 2013 when I applied (his cutoff is 65). Because I have been in a wheelchair since 2008, he was also worried that my muscles had atrophied beyond an acceptable level for HSCT to work. Dr George’s program in Seattle goes to age 70.

My Rituxan treatments are well covered by Medicare and working good for me. I can’t afford HSCT and my eligibility ends in a few months.

There are now four HSCT clinical trials running (Chicago, two in Seattle, Denver). There is also a good one in Tel Aviv.