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  • Steven Corn

Get Sick In One State...Move To Another

If you live in Illinois, then you are lucky.  It's not because of the Cubs. However, if your child has Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS) and Pediatric Autoimmune Neuropsychiatric (PAN), then you are indeed very lucky.

That's because Illinois passed "Charlie's Law" in July of 2017.  This made it mandatory for all insurance companies in the state to provide coverage for IVIg infusion therapy for PANDAS/PANS patients.  Without insurance coverage, IVIg can costs families $1000's per month.


Now, using IVIg to treat these conditions is considered "off-label".  That means that it's an FDA approved treat for other illnesses.  But it is not approved for this particular type of use.

And yet, it works...very well.


So what are you to do if you live in Texas or any other state?  Where it is up to the insurance companies to decide if IVIg is an approved treatment or not?  Clinical evidence supports it.  But the FDA still has not approved it as such.


Even within a state, one company may agree to IVIg coverage while another might not.

So are you supposed to use up your life savings to give your child the treatment that works?  Or are you expected to pick up, leave your home, and move to Illinois?


Neither seems like a fair option.  A key element of insurance reform has to be creating uniform standards for coverage of efficacious treatments.

#FDA, #NORD, #patientrights

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