clinical trials... how do they work?

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ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 5/21/2008 5:07 PM (GMT -6)   
My main question here is, when you're participating in a clinical trial, are there costs involved? I mean, do you need to have health insurance for it to be processed to, and do you cover the costs of the medications/copays? Or is it all at no charge since you're basically being their lab rat???

I've always wondered about that but never really asked anyone, and it would really make sense for them not to charge for experimentation, but then again, we know how that goes.

I have been checking clinicaltrials.gov for awhile looking for trials in my area and have found one for Avonex and I was thinking about applying, but wanted to be sure I knew everything there is to know first! :)
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 5/21/2008 5:20 PM (GMT -6)   
I did a trial way back in 2000 and it was great.

I paid nothing. Not one penny. i just walk in and leave when they are done. I had several scopes, probably 6 visits and all meds free. The drug i was doing a trial for never came out. It was a by-product of aloe in a powder form that i drank three times a day. In two weeks my colon was 80% better (though having scopes every two weeks was no fun and i feel plenty of payment) too bad it never came out.

My GI is always looking for lab rats. He does tons of trials. The nurse in charge of trials is always calling to see where I am and if i would fit into a trial.

If i had been well enough i would have done the liada trial a year or two ago. She kept asking if i was in remission yet. (it was a remission only tiral) She also new that my insurance sucked and I was paying 450 a month for asacol so she also wanted to help.

That's just my experience.
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 150mg Imuran, no more pred after two years!!!!
Prontonix once daily for acid reflux, zofran twice daily for nausea
Remicade started 3/1/08...just had 3rd infusion


lemonhead
Veteran Member


Date Joined Dec 2007
Total Posts : 1028
   Posted 5/21/2008 5:22 PM (GMT -6)   
In all the trials I have been involved in they have paid for the medications and the scopes and they even paid me. The amount of money they pay you is dependant on the study. The last one I did was 2 scopes over 8 weeks and 250 bucks. No need for insurance. My only cost out of pocket was my time and gas. I think it is great to consider doing a trial, but make sure the benefits outweigh the negitive side effects...if there are any. Good luck
diagnosed with left-sided UC in 1997. (45cm)
Currently on 10mg Prednisone
12 caps of colazal    9 caps Colazal
2 rowasa enemas nightly
35, female


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 5/21/2008 5:37 PM (GMT -6)   
Well, it seems the side effects for Avalox are flu like symptoms, which I can deal with. It's an interferon drug, I'm going to do more research on it tonight and find out what I can about. I'm not even 100% positive if they are still recruiting... clinicaltrials.gov says they are, but a lot of them that are up currently are actually closed to new recruits when it actually says it is open. So I'm just waiting on an email response from the coordinator.

It's also an injection drug (once weekly), which I'm a little nervous about and I don't think I could inject myself, but my mom is a nurse and also has insulin dependant diabetes and injects herself daily, so I figure since I stop by at least once a week any way, I could have her do it :) Hehe.

Well, I guess I'll let you guys know one way or another :) Hopefully I'll be able to get in the study and test out a new drug for us! (And hopefully not placebo... I'd be pissed if I found out I was stabbing myself with a placebo every week for nothing!! :P)
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


fitmom00
Regular Member


Date Joined Mar 2008
Total Posts : 113
   Posted 5/21/2008 7:04 PM (GMT -6)   
I just got my paperwork today for a colal-pred trial. I have to go there 1x a week for 6 weeks, they'll do 2 sigmoidoscopies, draw blood each time and the meds are all free. On top of that they will pay me $375. This is my first experience w/ a clinical trial, so I'm not sure how normal that is.
Renee
Diagnosed w/ UC in August 2007
Current status: Flare

4 Lialda/day, Rowasa or Canasa at night, Wellbutrin XL


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 5/21/2008 7:05 PM (GMT -6)   
Nice! I wouldn't mind getting paid for sigmoidoscopies... In fact, I think they should do that all the time! ;)
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 5/21/2008 8:42 PM (GMT -6)   
I have been in two different clinical studies. Both were Phase 3 double blind placebo controlled studies. Not all studies use placebos. There are 4 phases. More information about each phase can be found at:
 
 
Phase 3 is the phase just before approval and I recommend you stick with them. They have already had phase 1 and 2 testing which means some information is already available as to safety and effectiveness. Also if they work for you, you will most likely be able to continue on the treatment at no cost until it is approved. After that your insurance should cover it. It could take a few years to be approved. A good article about “Understanding Clinical Trials” can be found at:
 
 
Don’t let the chance of receiving the placebo bother you. If the initial stage of the trial does not produce results you will be given the real treatment. There should be no cost to you for the medications, scopes including prep or lab work. I found I got much better attention from my GI when I was in the studies then when I was just another patient. I had easier access and more time devoted to me then normal. Study patients get higher priority. Both studies I was paid $20.00 for each visit whether it was for a scope, treatment, lab work or physical checkup. Not enough to get rich on but it did cover my transportation and lunch. Unfortunately neither study helped me and I am now considering surgery.

Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/21/2008 11:40 PM (GMT -6)   
i tried out for one for a lotion for my hands i have some kind of weird rash, it was a skin cream to clear it up, anyway, i didn't get chosen but i got paid like 25 dollars for going and i got a free exam and meds, and they did tell me that if i were to be chosen i would get free visits and i would get paid. But you don't always know if you have a placebo or not
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