NJ, so sorry to hear this. Same thing happened with my uncle and glioblastoma in the spring. Worked really hard and he was OK being on board with getting LL through the company and the company was more than helpful in the process. Family was all on board but his condition weekenad so badly in a matter of days that they had to call in hospice. He was bedridden at that point and insurance would not allow him to be on any medicines while on hospice.

It was so infuriating and my uncle chose to live his last days under hospice care instead of going off for a couple of days while the medicine was shipped to him. He lived another two or three weeks and sadly passed April 8.

I was OK honoring my uncle’s decision, but I became extremely bitter upon realizing that even an experimental drug that had not been approved yet would cause the insurance company to cancel his hospice care.

When all this shakes out, and hopefully soon, I’m going to demand answers from his insurance company and work towards better hospice care policies being written. Most likely will get nowhere by I certainly will be vocal.

My best to you and your family.