Steve Brown
๐ค SpeakerAppearances Over Time
Podcast Appearances
But now it's
It's kind of good news because there's happens to be a it means it's vulnerable to this other drug.
Well, this other drug was approved for a different disease and not approved for mine.
So it's off label.
But, you know, any doctor knows about it.
And, you know, kind of most doctors are like, well, that's.
off-label, you've got a rare disease, there's no definitive clinical trial that's proved all this stuff, but it all makes sense in theory.
But most doctors will be like, I'm not going to do that.
Yeah, but you go to the top people in the field
who are more in the academic medical centers and are involved in research, they know about this stuff and they're using it.
So I went there and I said, look, I want this.
I think I need this.
You explain to me why you don't think I need it.
But from everything I know, I think I need this.
Now, then the issue is it's off-label.
is my insurance is off-label.
It's $25,000 a month retail.
Maybe with Mark Cuban's thing, you can get a little cheaper.
But still, it's a lot of money.
It's off-label.