Has anyone experience a change in insurance during their treatments, if so do you have any advise? My husband is a retired fire fighter in the State of WI. Due to changes in state law we are given no choice in insurance so we could not avoid the change.

Yes I have, and it's not unusual for the new insurance company to question why an SCLS patient really needs to receive IVIG and why every 4 weeks -- including when that new insurance company is Medicare. Therefore, you may have to submit to them copies of your prior insurance company's records showing that they covered your infusions, and supplement that with an explanatory letter from your main doctor, and also copies of, or links to, articles appearing in the Disorder Resources section of this website -- and particularly the latest article by Dr. Druey and team from NIH, see the Discussion Forum topic "Publication of Results from Survey of IVIG Therapy." The good news is, unlike when some of us pioneers went on IVIG years ago on an experimental basis, now there is abundant evidence that IVIG is the most effective treatment for those duly diagnosed with SCLS and with a history of recurrent episodes which were not prevented by other, cheaper medications.

Thank you, I am working with the insurance company and hoping things go smoothly.

I am about to transition from COBRA benefits to Medicare based upon disability rather than age. This is a good thing in that I've been paying a four-digit premium for the past 24 months. However, I am a bit concerned that their coverage decisions may be even tighter. Any experience from the group?

I am changing insurance Jan 1. I have my letters from Dr. Druey from the NIH to make things easier. Let us know how your transistion goes. It is a lot of work. I have the insurance company , the pharmacy and nursing company to do the home infusion to approve. I now have approval once a year. This is the main item I hope goes well. I believe some approve every month still. Walt