my brother in law had a brain tumor and got enrolled in a clinical trial at Johns Hopkins and lived for 11 years, most of that he was working full time. He set a record and when he passed away, his neurosurgeon and oncologist were there.
He and my sister looked long & intensely but they sure got some results. Originally the Brits (he was British) had given him 18 months and did not schedule an MRI for 7 months later but he married my sister and got on her insurance (yes pre existing condition and all) and that was that.
I think they spent about $300 a year for his uncovered expenses. After he passed away, my then 47 y/o sister went back to school for nursing and now she takes care of patients with head injuries and tumors.
I do health care law. Gabbys suggestion about calling around makes sense. You can argue that you want supportive symptom reducing palliative care and if that HAPPENS to also prolong life, do it.
My dad's cancer caused his liver to block and his abdomen swelled. Lots of pressure and discomfort and some pain. They drained him and then wanted not to do it anymore b/c it prolongs life but I made the "but it's also palliative" argument and then they agreed.
But as it turned out, he only needed one more treatment b/c his death was pretty quick. (56 days from day of dx).
My point was that there are arguments you can make OR perhaps alternative companies you can switch to. There are usually a few hospice companies in each area, and there are those other in between entities.
The Aff Care Act will not help you much, so don't head in that direction. I'm not being political but just familiar enough (with the law) to know that others are NOT familiar with the law, and it'll delay everything to even refer to it.
Plus what it says, will not help you get an answer that you want, anytime soon.
But there are options, Good luck!
M: 57 H: 60 M: 35 yrs S30,D28,D19 H off to Alaska 2006 Recon 7/07- 8/08 *2016* X = "ALASKA 2.0" GROUND HOG DAY I File D 10/16 OW DIV 2/26/2018 X marries OW 5/2016
