We are looking for any and all info on getting Medicare to cover experimental treatment. This disease is so rare and every treatment is considered experimental. It is very difficult to get insurance to cover the treatment. Although private ins. is covering most patients.There is one precedent of Medicare covering IVIG for Scleromyxedema that we know of in Wisconsin. Does anyone know the code Medicare might be using for experimental treatment?
Thank you

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Have you asked the clinic to take you on as a charity case? They do that sometimes if they know there isn't any coverage by the insruance that you have-also for meds. I haven't had that problem but did research it for my sister & her autoimmune disease.

If he's on meds, check the computer for coupons, sometimes they're out there. If nothing else it will pay your co-pay.

I go to a very nice rheumatology clinic, I can call and ask & try to get it for you. All they can do is tell me no, right?? I have another person I can ask, too, if they do say no.

Give me some time, they don't move very fast at that clinic, they're extremely busy always. I will get back to you either way, promise! In fact, I'm going to friend you, that way I'll remember to stay in touch for sure. :-)

Hang in there, the answer to your problem is out there somewhere.

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Thank you I will!!!

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