How to deal with insurance denial of therapy

[Karen]

I got a letter from my insurance denying coverage of plasmApheresis as there is “no evidence showing long-term benefit in MG”

I am LRP-4 positive and there are currently NO therapies that are currently approved for non-MUSK/ non-ACHR (+) MG; primarily b/c no studies are being done is this population—-something that is a chronic problem having a rare subtype of a rare disease—there is no financial incentive to target this subset.

My disease course is riddled with hospitalizations for respiratory failure; I’ve been on high dose steroids (gave me suicidal ideation, AVN in my R hip and not many options for IV access; IVIG (which worked for a few years, but the the hospitalizations started again, during which I responded well to PLEX (plasmApheresis). I was initially getting it monthly as an OP, then q3wk and then q2wk—at which point my hospitalizations drastically decreased—-that was >5yrs ago.

I have 6mo to appeal and don’t know what the best strategy is, nor does my neurologist—I would appreciate any advice

thx

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