A local newspaper has been doing a series on blood donation this week (it's their Valentine's theme). My husband was featured in today's article about why IVIG is so expensive to produce. The article also gives some visibility and awareness to SCLS. If you want to read it, go to the below link (if I'm able to figure out how links work on this site :). "Calgarian battles rare disorder":http://calgary.openfile.ca/calgary/text/bloodfile-calgarian-battles-rare-disorder-costly-ivig-treatments Liesa

Thank you for sharing, Liesa! The $4,000/dose IVIG cost estimate cited in the article (for a 70 kg individual) is outdated and way too low. Besides, costs and prices are very different in countries like Canada with state-run vs. in the USA with private health services, because in the former you have a single buyer which greater negotiating power and also costs are not explicitly passed on to consumers. To give you an idea, the IVIG infusion I got today (for a 90 kg individual) was priced at nearly $22,000 -- and yesterday's infusion was another $22,000 -- and my private insurance company pays the infusion center closer to what it actually costs, which is about $12,000 per infusion (namely, $24,000/month). The mark-up is written off by the infusion center as per their overall contract with the insurance company. This is why persuading health insurance companies, public or private, to cover the cost of IVIG for SCLS patients 3-4 years ago was such a struggle before the treatments proved themselves so effective -- mainly in Europe, to start with.

Glad to share. And you are right about the cost of IVIG. The figures mentioned in this article come from Canadian Blood Services. The scope of the article didn't include how expensive IVIG can actually get when not under the umbrella of government regulated health services (not to mention the tons of other factors that drive this cost upwards in various regions).