I agree, Nytefyre. I found it interesting that the gap between low income and higher income children was not as significant until the introduction of biologics, but with biologics, the discrepancy became quite significant.
A couple of years back, I started on a Phase II drug trial for Ustekinumab (Stelara) and for the first time in years, my symptoms went from 'severe' to 'mild.' I know that the drug works for me, and it is on the market for people with psoriasis. Given that the drug had worked for me, my GI was more than willing to write me an 'off-label' prescription for the drug and I asked if the pharmaceutical company (same folks who produce Remicade) would release it to me on compassionate grounds and they said no.
Like you, I'm neither wealthy nor middle class, but I can't imagine a lot of people being able to come up with the $12,000 price tag every three months!
There won't be a Phase III study for a while yet for Ustekinumab, and in the meantime, my specialist (and the second and third opinion I got) is recommending an illeostomy in the very near future. It sure makes me mad to think that I have to go through this surgery when there is a drug out there that has worked for me, and that I could potentially try for a bit longer before I need to make a decision about such a significant surgery.
These things are hard enough for me to understand, but I can't imagine surgery and recovery for children, and the parents who are besides themselves trying to get the possible care for their children being enmeshed in all these money games.