Help me get lifesaving chemo meds

I have a rare disease called Idiopathic Hypertrophic Cranial Pachymeningitis. It's an autoimmune illness and my doctors think it's part of something called IgG4 disease, which attacks your entire body. A year ago I developed myocarditis and had a heart attack due to it spreading to my heart, and it's worsened since then, and has attacked other organs like my pancreas and ovaries. My doctors want to treat it with a chemo drug called Rituxin, and for 9 months we've fought with my insurance to try and cover it. They still refuse, but finally the manufacturer of the drug agreed to help us and give it to us for free. It's a $15,000 drug so that was huge news. We thought we were done with the stress and worry and that I was finally going to be okay. The insurance company had other ideas. 

Unbelievably, our insurance is now refusing to even pay for the infusions necessary to give me the drug. Since they're not approving the drug, they figure they shouldn't have to cover the delivery either. We're going to keep battling with them, because what they've been doing is wrong. But the clock is ticking for me and I can't wait for months or years for the insurance to do the right thing. The infusion center has agreed to let us pay out of pocket, but each treatment is going to run well over $1000, and I'll need multiple infusions to get the disease into remission. Meanwhile I'm taking high dose steroids to stay alive, which has resulted in weight gain, cataracts, and other not very fun side effects. I'm still working, but missing a lot of days, and we've exhausted my sick time and vacation time, and blown through our life savings just trying to keep going. 

I'm starting my first infusion at the end of August and then repeating into September, so it's fairly urgent. I absolutely hate to ask but we're out of options and time is running out. If you can help us in any way, it would mean a lot. Thank you so much. 
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Organizer

Wendy Parks 
Organizer
Phoenix, AZ
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