<human>: Summarize the given text in a few sentences.

This is for a friend, believe me or not.  Looking to leave politics out of it.

Recently, my friend was diagnosed with an extremely rare (say 1:100000 people) neurological disease.   There is a single, new treatment for it.   It requires monthly infusions that (without insurance) would run $50k.  This is just for the drug.  That doesn't account for normal pain meds, doctor visits, administrating the drugs etc. etc.

As you might expect, the medical system process is a nightmare, and insurance doesn't cover much of it.  He has a good job and fairly good insurance.  The problem is, he is looking about $50k/yearly out of pocket for his entire life.   So, he's basically a slave.  He could never quit his job (or lose insurance) or he would be bankrupt.  Without the monthly treatment, it is a life of pain and misery (literally, not joking at all).

He was given a lot of advice from various people, that all say "tell them you can't afford it, they have to treat you".   I don't believe that is sustainable.

Any advice would be appreciated.
<bot>: Rare, painful disease that costs $50k/year (according to/after insurance).  How does one pay for this and not live on the street?