Do MDs and hospitals get money for trials?

[mike716]

I know this sounds like a tendentious question, especially coming from a sawbones hater like me. But I really need to know this for very specific reasons. I am being offered participation in certain trials by MDs here in Argentina who are telling me not to do other trials. Their reasoning against the trials they aren't offering aren't very convincing, and I am wondering if they might have a special reason for offering me their particular trial. Like money.

So: can anyone tell me if the hep MDs or their hospitals receive money for signing up patients for trials?

Thanks.

Mike

[mike716]

I'm happy for you and only wish I were in a position to do the trial too. But I've plumb run out of leads. There's a limit to what one can do from a third-world country in the Southern Hemisphere, and tracking down trials that don't want to be found is apparently beyond that limit. (Begin music from The twilight Zone...)

M.

[mike716]

Unfortunately, Trish, none of that is helpful. The website doesn't specify locations except to give the city (there are over 100 hospitals in and around New York!), no one is replying to that email address, and when I called that number I got a nightmarish run-around that ended up with "If you aren't an MD, get stuffed."

[KniteWolf]

mike
  reconsider       bro  and     be persistent and patient   i'm  und   in the  B! trial  at  two weeks  

[Trish77]

This information from clinicaltrials.gov - hope it helps.

Contact: Boehringer Ingelheim Study Coordinator   1-800-243-0127   [email protected]

http://www.clinicaltrials.gov/ct2/show/study/NCT00984620?term=BI201335&rank=1&show_locs=Y#locn

[mike716]

Thanks, but I don't think I could deal with Tx and a new country at the same time. It's New York or Buenos Aires for me. I don't look forward to Tx-ing in NY either, frankly. No family or friends left there, no car, two hours from manhattan, etc.

I suppose I sound negative about all this. Sorry. I do appreciate everyone trying to help me. Very much. But shooting off into the unknown is not my cup of tea right now. I can hardly deal with life as I know it [grin].

(I'm going to reply to your 10/18 message as soon as I get the chance, hon.)

Mike

[mike716]

I've given up on that trial (BI201335). There's just no way to find out the sites. The company is totally unresponsive. They don't want to deal with patients, apparently. i have a short fuse these days, and trying to contact them has made me furious. I really don't know what's going on with this trials dance, and the gov is not helping by having such a user-unfriendly website. Once again, the sick are at the bottom of the heap.

Mike

[mike716]

Interesting website, but I couldn't find anything on it about trials. There is also no contact email address (typical of Argentine websites!).

[Rockerforlife]

How do you find out the study site from that location name (SANTURCE, Puerto Rico, 00909)?\



1-888-662-6728  

[newleaf09]

Sorry, I thought there was some reason that Rocker mentioned Puerto Rico.  Not a terrible idea for you.  You should have the language skills and it's a cheaper cost of living than the US.  I looked at the trial and it seemed okay to me.  No exclusions for cirrhosis, 4 out of 5 chance of getting the PI.

[KniteWolf]

might be a long shot  but  googled  this info
U.S. Headquarters Contact Information:

Boehringer Ingelheim Pharmaceuticals, Inc.
900 Ridgebury Road
P.O. Box 368
Ridgefield, CT 06877
[phone]
[phone]

maybe a call there would steer you in the right  direction ;0

[FlGuy]

http://www.anmat.gov.ar/

Assuming you speak the language, see if you can get in touch with a department that has information regarding clinical trials.

[mike716]

Good try, hon, but actually I'm nowhere near Puerto Rico. I was just trying to find out how to decipher the clinicaltrials.gov website.

For the BI201335 Phase II trial, the website gives this for the New York site:
1220.40.007 Boehringer Ingelheim Investigational Site   Recruiting
New York, New York, United States

Any idea what this means? (1220.40.007 is obviously not a postal code. And there are more than 100 hospitals in New York City.)

Mike

[newleaf09]

Easy, you google it.  It's a barrio in the most congested part of San Juan.  Here's a list of Hospitals online: http://www.theagapecenter.com/Hospitals/Puerto-Rico.htm
Check out the most likely ones in San Juan.  Several are VA hospitals.  Look for a teaching hospital attached to a medical school.

Also go to the Hoffman-LaRoche site.  They may have contact info for people intersted in trials (I think Vertex did).

Rocker, any other ideas?

[mike716]

How do you find out the study site from that location name (SANTURCE, Puerto Rico, 00909)?

[Rockerforlife]

Puerto Rico
Recruiting
SANTURCE, Puerto Rico, 00909  



http://www.clinicaltrials.gov/ct2/show/study/NCT00869661?term=RO5024048&rank=2&show_locs=Y#locn

[Rockerforlife]

Ive spoke with these people for my brother.

[Rockerforlife]

are you close to texas?
the ph # is  888-662-6728  

Contact: Please reference Study ID Number: NV20536 888-662-6728  ***@****




http://www.clinicaltrials.gov/ct2/show/study/NCT00869661?term=RO5024048&rank=2&show_locs=Y#locn

[mike716]

Are you kidding? I can't even figure out how to apply!

[Rockerforlife]

Have you been accepted to do a trial yet?

[Rockerforlife]

You dont need to worry about all the different arms and stuff,you have no control over those anyway,once you choose a trail,you only got 2 choices the polymearse inhibitor or the protese inhibtor....whats so complicated about that...go do the trail...you have an 80% to full chance of getting the real drug...

[mike716]

I seem to have woken up a hornets' nest with my thread question about MDs and money. I really only posted it because I can't figure out if what I'm being told by the hep MDs here in B.A. is true (like that the B201335 trial now recruiting is no good), or if they only want to get me into THEIR trial for economic reasons. And although there hasn't been a simple answer to this, I think the consensus is that ya can't trust 'em. But then we knew that already, didn't we?

I have an unusual problem. I get physically ill when I have to deal with morally degenerate people or situations. I get like nauseous and dizzy, the blood rushes to my head, and I have a compulsion to lash out in all directions. I guess it's rage. Rage against all those like MDs and drug companies and government bureaucrats and for-profit hospitals and the myriad other powers that are destroying my miserable existence.

So far I'm asymptomatic from the hepatitis virus. But I think I'm dying from the anguish of trying to deal with it.

Mike

[mike716]

Thanks for the info, Trish. It is all a little overwhelming, but I'm gonna try and sort it out as best I can.

I got a message from Lou, who is in the BI201335 trial. He wrote:

"group one is  120 mg of BI 201335NA combined  with peg.  riba.  for  24 weeks..potentially followed  by an add. 24 weeks of treatment **

group two is 120 mg of BI 201335NA combined  with peg.  riba.  for 12 weeks..potentially followed  by an add. 24 weeks of treatment **

** after 4 weeks if your are  und. at 4 weeks.....you will discontinue all treatment after week 24
if your  viral load is measureable at anytime after 4 weeks..you may continue  with  soc to  48  weeks"

If Lou is right, some people don't have the chance to do 48 weeks (the 12 + 24 arm). But then the second part contradicts this.

It's all too confusing for me. This is why I give up. I can't handle the information/misinformation overload.

I also can't find the trial sites from the clinicaltrials website, and no one answered my email to the company. Gee, this is almost as much fun as shooting myself in the foot.

I guess I'll have to try and call them long distance tomorrow (if the telephone number works!).

Why is this all so difficult? Why am I having so many problems? Is the big fella in the sky telling me that it's time to pack it in?

And to think that I spent my whole life avoiding involvement with officialdom and the squares, and now I have to chase after them. I really wonder if it's worth it. I find myself wishing I'd never been diagnosed. I could have just lived out what was left of my life as i wanted, until the pain got too bad, and then bye-bye. Now I have to dedicate every day to things I hate doing, like talking to doctors and searching for anbiguous or unrelaible information on government (oh, horror of horrors!) websites.

Enough of that!

Thanks again for all your help. Everyone. I love you all.

Mike

Mike

[Bill1954]

I typically read through these posts without telling you how much I appreciate your humor; seems this is a good time to say it… so thanks :o).

Bill

[FlGuy]

That's a good observation.  And depending on what happens down south of you the difference between politics and healthcare may, in fact, be indistinguisable--if it isn't already.