I Want a New Drug

[25yearsmlc]

BA

Like Rick's dad, my brother in law had a brain tumor but got enrolled in a clinical trial at Johns Hopkins. With their treatments, (mostly covered by insurance too) he lived for 11 years, & most of that he was working full time. He set a record for longevity, and when he passed away, his neurosurgeon and oncologist were there.
He was British and in his country, they had given him 18 months, offered no surgery and did not schedule an MRI for 7 months later (after a 60 day delay for a CT scan which made the diagnosis). Instead of waiting to see if he survived for the MRI, he married my sister, they moved back to the USA, he got on her insurance (pre existing condition and all) and that was that.

I think they spent about $300 a year for his uncovered expenses. So the 18 months turned into over a decade. (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.)

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. As a health care lawyer, I rarely saw Hospice get too strident when the argument that the life prolonging treatment ALSO feels better, was used.

My dad's cancer caused his liver to block fluids, and his abdomen swelled. Lots of pressure and discomfort and pain. They drained his abdomen and then wanted not to do it anymore b/c it prolongs life, but I made the "but it's also comforting/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 even head in that direction. I'm not being political, 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 the new law actually says, will not help you get an answer that you want, anytime soon.

But there are options, Good luck!