Group, Happy New Year! A few health insurance related questions to start out the New Year for the U.S. based patients on IVIG (I assume all countries are different): My situation is this: diagnosed with SCLS in 2010 and went on monthly IVIG infusions in July of 2011. No further signs of the disease since. I am on Octagam 5% and it takes two full days to infuse at treatment center. My insurance, through my group health plan at work(administered by Blue Cross Blue Shield), has been nothing short of amazing. Costs are low and no issues getting approved (knock on wood). Question I have is: have other people changed jobs and had problems getting approved by the new provider? This would now be classified as a 'pre-existing condition', but IVIG for SCLS is an 'Unlabeled use' so could other insurance companies refuse the treatment? Also has anyone experienced a job loss and had to go off their health plan? Go on government health care? One more question: does anyone know of a Health care consultant type of person that has expertise in this area, that I could consult with? Thanks for your help - I think of this often and feel concerned that moving jobs is not a good idea or if we face another round of job cuts, what the outcome could be??? Thanks for any guidance you can lend!

This is an issue most of us have encountered -- in my case, several times over, including presently -- because those of us who are getting IVIG are doing so on an exceptional, off-label basis, and also because IVIG is extremely expensive -- and getting so more and more -- such that government programs and private insurance companies have a huge incentive NOT to pay for it. (When I started getting my 90 gr/day dose in 2009, it was priced around $15,000. By now, 6 years later, it has doubled to about $30,000.) In my case, even though I haven't changed jobs, my employer has changed insurance companies, so it's been "back to square one" each time that they do. Moreover, now that I've become eligible for government-provided Medicare as a back-up insurance, I'm in the midst of appealing their denial, and even their denial-upon-appeal, of my getting IVIG. So yes, if you change jobs, you should expect to be denied coverage of IVIG by whatever insurance company your employer has contracted -- even if it happens to be the same one you had before! -- so the key is to be prepared to put on a good fight, namely, to increase the odds of a successful appeal. And this is a fight that many members of this Community have had to fight -- and I know because many have turned to me for help and advice -- so consider yourself to have been unusually lucky, indeed. Here are the ways to increase the odds of a successful appeal: 1) You have to get the physician who knows your medical history best -- preferably, from before you started the IVIG therapy -- to draft up a "To Whom It May Concern" letter making the case for why you need to remain on an IVIG therapy on an exceptional, off-label basis. (It's like getting a colleague to draft up a letter of recommendation, just in case you need it in the future.) 2) You have to get Dr. Kirk Druey at NIH to do likewise. He has done it for several of us already, and he will do it for you, too. 3) You have to put together a list of articles touting good experience with IVIG for SCLS. (This is the easiest thing: I can send you my list, which includes more than a dozen entries.) 4) If your job change will include moving, you need to line up a physician who will take you on and help you "fight the fight" and, if need be, will have you admitted to the hospital and give you IVIG on an emergency basis. (This is the hardest thing.) The long-run solutions, of course, are (1) to find a definitive cure for SCLS, because IVIG is not; and/or (2) to get FDA (and similar regulatory approval in other countries) for IVIG to become an "on-label" medication for SCLS. Dr. Druey is working on solution #1, and I am working on #2, but it is best to assume that either one is going to take several years to come to fruition.

We are so fortunate to have your assistance in this community. I unfortunately lost my job this year while off on disability. I carried the COBRA coverage from July until December but the cost is too great since I am still not able to work (I had two concussions with post concussion syndrome as well as a stroke secondary to the hypotension and hyper coagulation associated with SCLS). I am now going on my husband's insurance plan. They only offer coverage through the HSA plan so I will probably have to appeal as well. I would appreciate it if you could also forward me the list of articles. Thank you for all that you do.

Janiegrrriaz, Welcome to our Community! I'm sorry to hear about your situation, and of course I will help any way you can, but since I don't have access to members' email addresses or other non-public information, send ME an email directly at aporzeca@american.edu and I will be able to reply to you. And please fill out your profile page with as much detail as possible. It is pretty much blank right now, see http://www.rareshare.org/users/janiegrrrlaz

Thanks Arturo. Can you send me the list of good outcomes utilizing IVIG? mhennen7@gmail.com Thanks in advance.

For those people who receive Carimune or Privigen, the manufacturer CSL Behring offers an Assurance Program. For each month that you received an IVIG infusion of either brand they provide you points that can be accumulated. These points can be used to receive an infusion at no charge, provided you have no medical coverage. Not sure if the other providers of IVIG offer a similar program, but it is worth looking into.