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Link between high costs of meds and increased surgery.

Good article.

You know, as much as I bitch about it to the muffin, battling the insurance company for hours is a lot better than having to pay out of pocket. There is no way I could afford these meds (or the cost of everything associated with crohn's, etc) without insurance. I am not wealthy, probably not even middle class, but I have insurance, and I'm thankful for that. :)
 
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.
 
Hold the phone! or something like that! I just got off of the Ustekinumab study! Finished in November. I still had bleeding on and off, but for the most part, other symptoms disappeared, as you said.:)

Edit: I was also taking cipro/metronidazole 1000mgs a day-through the entire study! Now I have c diff.

I have not come across anybody else who has heard of this drug. Awesome Possum!
 
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Vonfunk: I ready myself to duel with dragons at night, so that might be why I got to the article before you!

Nytefyre!: I've been waiting for all of you to finish the study so that they can compile the information and come out quickly with Phase III! Like you, not all my symptoms disappeared, but it was the best I felt in eons. I had been on Imuran (150mg) at the time, and just before I'd started the study, I'd also been on antibiotics. I'm sorry to hear that you got CDiff. How obnoxious! Anyways, it's really good ("awesome possum", as you would say!) to meet someone else who'd been on the study. I haven't met anyone else who has been on the study...
 
I have seen quite a few commercials for Ustekinumab or Stelara on TV recently. As soon as I saw the ending of -umab I googled it and found out it was for psoriaisis though.

Back on topic though, Crohns is finicially devastating if you do not have insurance. I dont pay (and wont be for probably 9 more years) because I am still a student in high school. Our family is middle class and has had to watch what we do finicially now since I was DX because Crohns is just an expensive disease and if you need the expensive meds to get your life back, then their isnt much of an option.
 
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